Date:

06 Jun 1999

Time:

23:45:19

 

Comments

I am just testing out the new guestbook. It's just been in place since June 8, 1999, so please enter away and give me ideas, suggestions, and thoughts! Laura Stants

Date:

07 Jun 1999

Time:

09:38:39

Comments

Laura, what a wonderful idea to put a guest book on the front page of "Our SMA Angels". My name is Mildred Harris, I am Amanda's Nana, and I just wanted to tell you that I think you are a wonderful person for setting up this site where Mothers with SMA Angels can post their sites and can come to read about other children. Oh, we would have given anything to have had something like this when Amanda was here and so bad and we all felt so lost and alone. Now these Mothers at least know they are not alone and can come here for advice and just to vent if the need be. I know you are very busy with your precious little Devon but it is so great that you still find time to help others and give of your time like you do. Hope all is well with you and with Devon. You are doing a wonderful job. Thanks so much for your part in helping all "Our SMA Angels".

Date:

07 Jun 1999

Time:

16:03:33

Comments

Great Job!!! Keep up all the wonderful work! Love Joanne

Date:

07 Jun 1999

Time:

22:46:18

 

Comments

Laura,

This is a great idea having this guestbook and it is a great and wonderful idea of having this website. You have done an absolutely WONDERFUL job with it. You are a wonderful person and have become a good friend of mine. A friendship that has formed as a result of this website of angels. These children are so special and they truly angels in my heart. My godson has taught me so many things about life and happiness and what's really important. He is only a small boy, but his heart is of gold and he touches mine every single day. I am so blessed to have in my life. His mom, Dori, did his webpage which is found on this site. She did a terrific job and I absolutely love it. Especially the pictures. This is the real Cole...the big eyed, curly haired honey boy.

Thanks for everything Laura! You too have done a wonderful thing with Devon's webpage. It was an "awakening" for me to read your "thoughts" page. It is very special and personal, but so real to so many of us.

My Best,

Patty Kloster, Cole Kaycee Fiedler's Godmother

Date:

15 Jun 1999

Time:

21:41:04

Comments

Dear Laura & Devon and Family,

I felt that this was the best way to tell you that I'm thinking about you and hoping and praying that Devon is doing okay. I was so sad to hear that he had to be hospitalized and had pneumonia. It is so scary....

Lots of Love and Well Wishes, Patty Kloster

Date:

21 Jun 1999

Time:

19:20:18

Comments

THIS IS FOR MARISSA ROSE: I THINK OF YOU EVERY DAY AND I MISS YOU SO MUCH. I MISS YOUR CHUBBY CHEEKS, AND THE WAY YOU WOULD CUDDLE ON MY CHEST. I LOVE YOU SWEETHEART!!!!!!!!!!!

LOVE, AUNT DOREEN

Date:

05 Jul 1999

Time:

18:06:48

Comments

Laura, I love your web pages and what you have done for all are babies you are a very special person you have helped so many people with this site thank you and god bless. Love Sandy mommy to Marissa Rose Green

Date:

22 Jul 1999

Time:

20:49:28

Comments

Hi, I was just wondering if anyone has heard anything from Michelle Irvine. She was due to have her baby girl the first part of June and I haven't seen any news. It worries me.

Has anyone heard anything?...?

Thanks, Patty Kloster (pmtdklos@northpro.net)

Date:

04 Aug 1999

Time:

20:29:50

Comments

What a beautiful site. I lost my son to SMA Type I in April. Like all the children here he was the most precious being in my life. As a tribute to him and his battle my wife na I have built a site at www.wkswithsma.com. This site tells of his struggle and hopefully will help parents make their child's life a little more comfortable. Please visit and let us know what you think. Steve

Date:

18 Aug 1999

Time:

12:45:49

Comments

I came to see Brooke Binning. My name is April Booker. I am Brooke's Mom's first cousin. Brooke is so precious and we love her very much. I am impressed with this web site. It is very nice to be able to read updates on so many special children.

Date:

14 Sep 1999

Time:

06:11:35

Comments

Hi I love the site. Thanks for always listening and for being here. hugs Peg Bailey email: Sheggy@connections.ultranet.com

Date:

26 Sep 1999

Time:

13:33:59

Comments

I think this site is great for parents. I too have lost two very special angels in my life. The first was my son that had a tumor growing in his spine. He died on Dec. 10, 1979 at 14 months of age. To this day I still miss him. My other was my daughter. She was born with Down's syndrome. At the age of 2 she caught meningitis and lost her hearing. At the age of 14 she was at the day care providers and went to swing on a wooden swing set. The swing was not secured and the 2X4 gave way and hit her head. She died instantly without pain. I miss Jimmy and Teresa each and everyday but the passing of time has helped some. I will always remember and keep them safe in my heart. Michelle Justice was my great niece and she is in great company in heaven. Thank you. Donna M. (P.S. forgive the spelling)

Date:

29 Sep 1999

Time:

22:22:23

Comments

This is one of the most informative lessons I have had in along time. I have shared all of your information with our prayer group at church so you will have a few more prayers added to your list from now on. i also sent this address to as many of my friends as I could encouraging them to join in the prayers. With God's help all things are possible. May he continue to hold each and every one of you in his loving arms.

Jan

Name:

karen montreal

Email:

kmontreal@kesslercompanies.com

Date:

06 Oct 1999

Time:

11:10:37

Comments

Laura, Congratulations on your award! I can think of no one better to receive it as you do so very much for so many people. You are very much appreciated and needed and your tributes are beautiful to these angels. Karen

Name:

Alison Brewer

Email:

thewife73@hotmail.com

Date:

05 Nov 1999

Time:

15:33:21

Comments

I think this is very lovely. I had no idea anything like this existed. It was a real eye-opener. You all are very strong and should be commended!

Name:

Patty Squires

Email:

Pattysq@AOL.com

Date:

07 Nov 1999

Time:

19:55:01

Comments

This is the prettiest web site ever! You've done a great job and I look forward to checking in on it for updates. One question: what is Sma?

Name:

tracey

Email:

boilie@lineone.net

Date:

08 Nov 1999

Time:

14:53:54

Comments

words fail me, i am a student nurse who new nothing i met a child with sma and decided to find out what is was, i now feel i know a small amount with the help of this web site.

Name:

Rhonda Manuel

Email:

JMa8074055@aol.com

Date:

09 Nov 1999

Time:

22:15:21

Comments

Laura, Thanks for all the wonderful things you do for our angels! Take care of yourself. Rhonda and J.D. (SMA I - vent) Remember to keep your Faith!

Name:

Peg Bailey

Email:

Sheggy@connections.ultranet.com

Date:

18 Nov 1999

Time:

07:44:27

Comments

Dear Laura, Thank you for all that you do. Today is Taylor's birthday. I miss her immensely. Hope all is well with you. Peg

Name:

talia

Email:

betstaljor@earthlink.com

Date:

21 Nov 1999

Time:

19:52:07

Comments

my prayers are with you. God bless.

Name:

MINNI43

Email:

MINNI43@AOL.COM

Date:

04 Dec 1999

Time:

00:12:35

Comments

THIS IS REALLY GOOD IT MADE ME CRY IT IS SO SWEET I REALLY LIKE IT KEEP UP THE GREAT WORK U GUYS R DOING LOVE, MINNI43

Name:

Kim Vaugahan

Email:

momvaughan@hotmail.com

Date:

07 Jan 2000

Time:

15:28:12

Comments

My daughter Amanda Leigh Vaughan lost her battle to Werding-Hoffman spinal muscular atrophy Feb.12, 1991 She was born December 24, 1977. Mandy was the light of my life and my best friend. She was a hero and a friend to many people. Mandy truly is my perfect angel.

Name:

Thile & David Kreider

Email:

dkreider@paonline.com

Date:

08 Jan 2000

Time:

21:05:22

Comments

Dear Laura- Beautifully done! It is very informative. We are praying for you and Steve....

Love, Thile & David

Name:

Peg Bailey

Email:

Sheggy@yahoo.com

Date:

08 Jan 2000

Time:

22:20:35

Comments

Dear Laura, I cant thank you enough for all you do. The web site is absolutely fantastic. Thanks for making this a place to honor our loved ones. The music is such a nice touch. Hugs Taylor's best bud, Peg

Name:

Libby Poulin

Email:

libby@rffce.com

Date:

12 Jan 2000

Time:

15:37:23

Comments

My daughter, Alyssa, has SMA Type II. She will be 2 years old next month.

I found out in July that Alyssa had SMA and I haven't been to a support group yet. I did join FSMA and receive their information. If there is anyone out there who would like to talk, I'm here. Parents with "normal" children just don't understand.

Libby Poulin Mother of Alyssa Emily Poulin

Name:

mia

Email:

maria.karlskoga@spray.se

Date:

13 Jan 2000

Time:

08:24:56

Comments

I am so sorry for all of you...

Name:

T. Flores

Email:

tflores@bwoodtx.com

Date:

15 Jan 2000

Time:

01:26:24

Comments

We have just recently heard of SMA and I wanted to know more about it. My niece and nephew have both been diagnosed with it and I needed to know more about it.God bless you and all the other families of children with SMA and thank you for sharing your stories with us.

Name:

Patti Morrison

Email:

pwmpmm@aol.com

Date:

16 Jan 2000

Time:

02:30:43

Comments

I think this is a wonderful website and a great support for the families of these Angels. I don't have first hand experience with this but I do have a 11 year old nephew named Austin Morrison who has MD. He is a wonderful child with a great sense of humor. We always enjoy spending time with him. He never complains and is often the life of the party. He lifts our spirits with out even trying. I also have a newborn cousin who has been diagnosed with the worst case of Werdnig-Hoffman Paralysis. She has opened her eyes and enjoys hearing her daddy sing but her condition is grave. We are very concerned about her and her family but I do know that there faith in God will help them through this. Thank you for this opportunity to share with you and I will keep all of these children and their loved ones in my prayers. God bless all of you.

Name:

Stacy

Email:

schomburger@wgvhq.com    m

Date:

18 Jan 2000

Time:

14:35:39

Comments

I think this website is wonderful and informative. Watching my best friend deal with this horrific situation has been saddening and surreal. But, knowing Kourtney Schmidt and watching her laugh and coo has been an experience I will never forget. She was and still is a beautiful little angel that loved her family---All of us---and she has made so many people realize how great and rewarding life can be. I, too, have the utmost respect and love for my beautiful friend, Brandi, who is one of the most kind-hearted, loving and strongest individuals I know. My prayers are with all families who struggle with this tremendous burden.

Name:

kim gleason

Email:

kimg@davisandcannon.net

Date:

18 Jan 2000

Time:

16:10:10

Comments

What a great idea! You all should be commended for all your efforts in creating this website. The loss of a child must be a terrible feeling which I hope I never have to endure. You should take comfort in knowing you are all big angels for surviving the deaths of your SMA angels. May God give you strength and heal your broken hearts. One teardrop represents one wonderful memory of one angel! Can you imagine how many wonderful memories are remembered when we cry many tears, or when we have rain from Heaven!

Name:

Robert B. Elliott

Email:

elliottrb@att.net

Date:

19 Jan 2000

Time:

11:45:33

Comments

The site looks great and its purpose is awesome.

Name:

robin streit

Email:

rockanrobbin@aol.com

Date:

19 Jan 2000

Time:

16:51:12

Comments

With crazy, busy days and life how it is, it is so difficult at times to get to the internet. Many times when you take the time you are disappointed by most of the crap that is out there. This is truly the most beautiful site I've seen! May it comfort many and enlighten others. Everyone needs angels looking after them. I feel happy for the loved ones who are guarded by these beautiful angels

Name:

Lori Nance Parrish    (birth name Laurene Glee Nance, Lori is a nickname

Email:

lparrish@shadow.net

Date:

19 Jan 2000

Time:

22:02:54

Comments

Hi and thank you Laura. I'm little Kourtney Nicole Schmidt's Nonnie.

Name:

Kim Cardone

Email:

SailSugare@aol.com

Date:

21 Jan 2000

Time:

18:44:56

Comments

Kourtney Nicole Schmidt will always be in my thoughts. Brandi, Kevin, and Kasey - I love you guys!

Name:

Colleen Grams

Email:

SCGRAMS@USWEST.NET

Date:

22 Jan 2000

Time:

13:20:44

Comments

What a wonderful website! Oliver Huston is my nephew and he is as beautiful as the pictures. God Bless!!

Name:

Kim Boudah

Email:

Date:

23 Jan 2000

Time:

09:20:09

Comments

I wanted to tell you how much I love your site and how very informative it is about Sma. We also wanted to say Happy Birthday to the angel we know - Happy Birthday Casey !! Tom and Tommy will see you all today , but I have to work ,so i wanted you to know i was thinking about you on your special day !! I can hardly believe it's been three years !!Hope to see you soon! Keep up the great work Sue !- Love from Kim, Tom and Tommy

Name:

Kelli Flores

Email:

KRF87@cs.com

Date:

23 Jan 2000

Time:

12:55:37

Comments

I am here in behalf of my cousin Aaron Schindler, who is fighting the battle of SMA type 2. Aaron is 19 years old and is currently admitted to a local hospital where he is taking treatments to rid his lungs of pneumonia. Aaron is actually doing pretty good, and the doctors believe he will be able to go home in a few days, and they don't see this as life threatening because of the quick and loving care that his family has given him. Aaron is enrolled at a local community college and is an established graphics artist with some ties with people that used to work for Disney. He is a wonderful young man with a smile on his face all the time, he is very easy to get along and so far has the staff at the hospital wrapped around his little finger. They adore him there and he has made many friends, which I believe it helping him to fight the pneumonia off. Anyone interested in knowing how Aaron is doing can contact me or if you would like more information I can arrange for his mom or Aaron himself to chat with you. Please do feel free to email: KRF87@cs.com (my home email) May God Bless all these wonderful little angels that have come into our lives and those that have gone back to the Father to watch over us today. I know I am Thankful to God that he has graced me with Aaron, for my life has been filled with joy and love that he brings.

Love Kelli

Name:

Jeanne Yon

Email:

jfyon@bellsouth.net

Date:

23 Jan 2000

Time:

19:05:42

Comments

What a wonderful memorial to these little angels.

Name:

Robert Harrison

Email:

ebonysun@bellsouth.net

Date:

25 Jan 2000

Time:

22:00:32

Comments

To Lori, and family, I'm sorry to hear about your loss. My prayers are with all of you. I'm positive Kourtney is in a better place looking down on all of us and smiling, as she watches over the family.

My Love, Rob

Name:

Fran Agin

Email:

Magin@uswest.net

Date:

27 Jan 2000

Time:

21:10:25

Comments

Angels come down to teach and touch us Some for a moment, some for a life time.

God Bless

Name:

Angela Egan

Email:

londonlady@home.com

Date:

27 Jan 2000

Time:

23:26:42

Comments

This website is so heartbreaking yet so special

Name:

Robert Cooley

Email:

JoeNavy914@aol.com

Date:

29 Jan 2000

Time:

18:09:50

Comments

My son is now 4 yrs old. It is just him and I living in a 3 bedroom house on a military base outside of Los Angeles. He is such a joy to take care of. I love when I get off work, hop in my car, and head over to the daycare provider's house to pick him up. I just walk in to her house because it is her policy for the parents to have that priveledge when their children are being sitted by her. I always seem to catch him by surprise as his eyes light up and he shouts what I should consider my second name "DADDY!" Boy, what that can do to a person. It makes me so happy to know my son loves me as much as he does. Marcus (my son) has filled a crater of lonliness in my life. If ever I am sad or down, I just think of him and know matter how bad things are there is room for a smile on my face. So often he makes me laugh, at 4 years old he is starting to figure life out. He says the cutest things, he always a legitament 4 yo excuse why I should let him sleep in Daddy's bed, which I give into about 1/2 the time. I asked him one day "Marcus, what is Daddy going to do when I find a Girlfriend (who knows when that will be), and she wants to sleep next to me?" His response came with a twisted smile and a shrug of his shoulders as his hands were raised above his head: "Daddy, you don't need a girlfriend!" I just laughed, but you know, he has completed my life so well that he is actually right, I don't NEED one, want?.......well anyway. He is a video game king, this kid can figure these high tech adventures controlled by him out like it is nothing. Sometimes I will play with him, and he will get annoyed at me and take the controller away as I am "doing it wrong", another smile from me to him. I am a very proud father. He is getting at that age, he is really starting to put two and two together and add up what is wrong with him. He asked me on the way home from work the other day when he was going to walk. I did not know how to answer that, and I couldn't smile, as a matter of fact it took alot of emotional control to keep from crying. But he deserved his answer, so I held his little hand, squeezed, and tried to find his little blue eyes (had to be careful, I was driving) and told him that it would be very difficult for him to ever walk because he is special, and not exactly like all the other kids. He just said: "OWE", and his eyes stared ahead at what I am sure was something that only he could see. Marcus is so special, he is so caring, he is so smart, he has came into my life, and others to make it complete. Marcus is Daddy's little Angel.

I have been introduced to this webpage by Erinne's Mom, and visited for the first time today. I will visit it frequently and cry I am sure, like I have been for the past 45 minutes. I guess you could say I can relate to the stories, Marcus was diagnosed with Congenital Muscular Dystrophy when he was 8 months old, and just the other day at the Muscle Disease Clinic I was told he may have SMA. That doesn't really change anything, Marcus is still my son, he is still my buddy, he is still my little Angel.

Thanks to all of you in similar situations for sharing your stories.

Robert Cooley

Name:

Kara

Email:

Sxycaldrm@aol.com

Date:

29 Jan 2000

Time:

19:46:33

Comments

May God bless each and every one of you and give you and your "Precious Angels" strength. This site is truly amazing, thank you for sharing it with me.

Name:

Manda

Email:

Honda16Princess@aol.com

Date:

30 Jan 2000

Time:

18:58:14

Comments

awww~! Rob i know i don't know you well even though we talk sometimes..but you and your son are really something special..along with all the other SMA angels..i really envy you guys..people don't understand how much you guys go through, I may not even understand..you almost have to experience it first hand to understand it...i have looked at this site 4 times today and everytime i look at it i always read something i didn't see the times before and i cry everytime i come to this site :*( it's incredibly sad that things like this are in the world...my prayers are with you, Rob and also your son..and all of the other mentioned children and families in this page.

much love and prayers ~!manda!~

Name:

Kelli Fliores

Email:

KRF87@cs.com

Date:

03 Feb 2000

Time:

23:58:40

Comments

I just wanted to scream out with joy, with the new findings in the SMA research, that they have found a cure that has worked on the research mice. I just pray that soon it the medicine will arrive for our loved ones to use. How the little angels above have been watching over the researchers guiding them the way so that there will be no more victims to SMA. I cannot wait for the day that they can give my cousin Aaron the medicine, though he will not be able to walk at least he will be rid of the disease and it won't progress anymore. Dear Friends, lets continue to pray for this medicine to arrive quickly!!!! Take Care and God Bless!!!!

Name:

Joe DeAngelis

Email:

JOEDE49@c4.com

Date:

04 Feb 2000

Time:

01:16:06

Comments

Excellent web site! Keep up the good work. We all pray that the recent breakthrough will be the "Magic Bullet" of the new millenium.......

Name:

Steve Danglade

Email:

danglades@gacnw.com

Date:

04 Feb 2000

Time:

19:16:52

Comments

God Bless you all.

Thank you for sharing the beauty of these kids. They make the world a more special place.

Name:

Sarah Heywood

Email:

psandboys

Date:

04 Feb 2000

Time:

22:51:42

Comments

You have a beautiful site. My husband and I are acquainted with the parents of Devon and Sidney Stants, and we had the privilege of meeting Devon 5 months before his home going. Our prayers are with you.

Name:

Dr. Susan Cooksey

Email:

susan.green.cooksey@kp.org

Date:

10 Feb 2000

Time:

16:21:32

Comments

Thanks for letting me [and others] share in your family's celebrations and losses. Mt patient and friend Sandy told me about your site. I wish that I had known about it for her, so she could read about your story and find support in your family. Best of wishes and future to you and your family.

Name:

J. Kempf

Email:

Kempf003@tc.umn.edu

Date:

11 Feb 2000

Time:

22:10:30

Comments

I am a registered nurse that works in pediatric homecare. I have been taking care of a boy with Wernig Hoffman disease for the past 2 years. He just celebrated his 5th birthday!

This is a wonderful website and I will use the information when training new nurses to the case. I also plan to inform the parents of this website and to give them the information I found on support for families of children affected by this disease.

God Bless you all!

Name:

Judy Hastings

Email:

Date:

15 Feb 2000

Time:

19:41:50

Comments

What a beautiful site!

Name:

Judy Hastings

Email:

Date:

15 Feb 2000

Time:

19:55:05

Comments

I am thankful there is a website like this for my daughter, Rami, son-in-law, Joe and their little angel, Ilsa. May they feel the warmth of God's hand as he guides and comforts them through each day.

Name:

Connie Jones

Email:

mrjone7406@aol.com

Date:

16 Feb 2000

Time:

08:12:35

Comments

I teach children with this disability. Any news related to treatment or cures are much appreciated. I want to help my students in any way that I can. Sincerely, Connie Jones Wallace A. Smith Elementary Ooltewah, TN 37363

Name:

L Ricca

Email:

Date:

19 Feb 2000

Time:

10:34:14

Comments

The web site is very pretty and a beautiful remembrance of these children and their families. GREAT JOB!

Name:

kayla

Email:

BOO6993@msn.com

Date:

19 Feb 2000

Time:

19:33:05

Comments

i think it is so neat that you have a guest book to go to and sign i think everyone that signs this is thinking about all the little angels everytime i get on the internet i come to this site i really like the one about the little girl named kayla. i feel really good because my name is kayla too. i just think about her and i pray for her family to i just think it is so cool that her name was kayla my whole name is kayla renee plunkett well i better go i love ya and i'm praying for the families who lost there little angels. kayla renee plunkett!!!!!!

Name:

Donna M. Hill

Email:

grumpee@Hiwaay.net

Date:

20 Feb 2000

Time:

23:03:07

Comments

I don't know what it is like to lose a child, but I have lost a parent. It is a hard thing to deal with, but through the help of GOD and family and friends, you can survive. There may not be any words a person can say to take the greif away, but remember, your children and loved ones are in heaven as our ANGELS. I will pray for each one of you, and your family. Remember you always have a friend to turn to.

Name:

Belinda Parker

Email:

bparker@admin4.hsc.uth.tmc.edu

Date:

21 Feb 2000

Time:

10:01:24

Comments

The web site is great for remembering those lost to this disease. It also helps in bringing awareness about the disease.

Name:

June Hendrickx

Email:

jhendrickx@mail.ff.cc.mn.us

Date:

24 Feb 2000

Time:

10:13:37

Comments

They are angels here on earth. I truly hope they find a cure. Someone I know has SMA and he has been in prayers - maybe we will finally have an answer.

Name:

Susan, Jessica & Gary Young

Email:

Date:

26 Feb 2000

Time:

19:01:33

Comments

We came to see the story of Rhiana Gallagher, the daughter of my cousin Danny and his wife, Kim. The story gave us an understanding of the disease. Kim and Danny, God Blessed you with a very beautiful daughter.

Name:

Jennifer

Email:

zwoman006@aol.com

Date:

29 Feb 2000

Time:

22:50:56

Comments

Robert and Marcus: You are quite the pair

As I look at this page my eyes fill with tears and mt heart aches. There are so many special people sharing there lives here. It is amazing to me the braveness i have seen here. To Rob, I admire you and your drive to make your son the center of your life from the moment we met i could tell the dedication you have to your "angel" Marcus is so special and i am glad he has you in his life. I know that times are tough right now but your love and dedication to him will bring you together again. i have faith that you will be there for the long haul. I wish more fathers would be as committed to there children as you are, you are an example for all. I feel the love that you have to share and that will get you through, hold on tight to everything you have and nothing bad can ever see it's way to your life. I pray that you and Marcus will live long, happy, prosperous lives and share many things together. I am very glad I have you both in my life. I think about you often and smile for the admiration you have shown me. Love will conquer all. Best wishes my heart, my thoughts and prayers are with you both.

Name:

Angela

Email:

mondolink@bigpond.com

Date:

01 Mar 2000

Time:

05:28:29

Comments

Hi to all. I think you are all doing a great job. I also have a son David 8 years old who has SMA II. He is doing really well, but will have to have spinal surgery in the near future due to scoliosis progressing very fast. I would like to hear from anyone who has experienced surgery at this young age.

We are all very lucky to have our SMA ANGELS, because that's what they are.

love you all Angela Melbourne, Australia

Name:

Nancy Shade

Email:

gold@iw.net

Date:

02 Mar 2000

Time:

12:22:22

Comments

Great site! I have a 7 year old daughter with SMA.

Name:

AUNT PENNY GOULD

Email:

GOULDPENNY@AOL.COM

Date:

02 Mar 2000

Time:

19:41:16

Comments

MY PRECIOUS LITTLE GREAT-NEPHEW WHO IS JUST UNDER 10 MONTHS OLD HAS SMA TYPE I. OF COURSE IT IS HARD TO DEAL WITH BUT HE IS SUCH A JOY TO HAVE THAT WE ARE COPING AS BEST WE CAN. I AM SURE YOU ALL KNOW OF WHAT I SPEAK. MY PRAYERS GO OUT TO EACH AND EVERY PERSON WHO READS THIS BECAUSE IF YOU DID NOT KNOW WHAT I'M TALKING ABOUT, YOU WOULD NOT BE READING THIS. GOD BLESS.

Name:

Cynthia Scott

Email:

cynthiaascott_2

Date:

08 Mar 2000

Time:

11:13:21

Comments

This site really did touch me. I have a daughter named Cayce Lynn Scott who was diagnosed at 1yr and 3 months with SMA type II. She is doing amazingly well despite a bout with pneumonia in October. Boy, was that scary!! She is currently attending pre-school full day and loves interacting with the teachers and kids at school. I realize after visiting this web site how lucky I am to have Cayce. She may be a victim to this horrible disease, but she has a wonderful part of my life for five years now. I am very hopeful for her future. We were initially told we would be lucky to have her for six weeks, six months, or possibly six years if we were very fortunate. The same doctor who diagnosed her is amazed everytime he sees her. She is a real trooper. She is the older sister to a three year old "SMA-free" baby as well. She plays the part of older sister very well along with terrorizing him with her motorized wheelchair!! Again, I enjoyed visiting the site. Some segments were difficult for me to see. I hate the thought of being in the position that these parents have been through when they ultimately lose their child. My prayers are with them all. Signed, Cyndi Scott

Name:

DIANA LATIMER

Email:

DianaL2717@aol.com

Date:

11 Mar 2000

Time:

22:59:44

Comments

MY BEAUTIFUL GRANDDAUGHTER DIED FROM THIS TERRIBLE DISEASE. SHE LEFT US 2 YEARS AGO. HER MAN WAS KRISTIN LEE. SHE DIED AT 6 MONTHS OF AGE TO SMA TYPE 1. IT HAS TAKEN ME ALL THIS TIME TO GET UP THE STRENGTH TO LOOK AT WEB SITES LIKE THIS ONE. IT IS SO SPECIAL TO SEE WHAT FAMILYS HAVE DONE TO HONOR THEIR BABIES AND CHILDREN. MAYBE WHEN I'M A LITTLE STRONGER I WOULD LIKE TO HAVE A PAGE ALL ABOUT KRISTIN. WE MISS HER SO.

Name:

Kristi Evans

Email:

Bluizz74

Date:

16 Mar 2000

Time:

13:55:17

Comments

I just wanted to let you know that i have realy enjoyed reading this beautiful web site. I never realized that there were so many cases of SMA out there. I am just glad to know that i am not alone. My child was also diagnosed with sma typeI and was given a short life span. But i would like for every one to know that he is doing extremely well and will turn five years old this august. We have had our ups and downs but more ups than the downs. I am really sorry for those of you who have lost a loved one to this horrible disease. And I also have asked the question of why. I have always wondered what i did wrong in life to have a child born only to die before his time. But now i realize that god has chosen those of us who is strong enough to care for one of his children. This is a test that god has chosen to put us through to see if we are strong enough and capable of taking care of his precious gift. I also want everyone to know that these little angels were brought here for a reason. Not to die but to teach everyone a valiable lesson in life. To teach you family values and strength, And the power of living. So continue to be strong and hold on to what you have and you will learn this valuable lesson in life.

God bless you all, Kristi Evans Mother of Christian SMA Type I

Name:

richard harrison

Email:

grzzlyrich@aol.com

Date:

16 Mar 2000

Time:

22:07:38

Comments

this is so sweet but so sad babies always go to heaven and that's good but it is sad to lose a baby i do wish you and all the kids the best and hope for a cure soon

Name:

Ferne Jaffe

Email:

afjaffe@earthlink.net

Date:

20 Mar 2000

Time:

17:52:32

Comments

Thank you for creating a beautiful website for anyone who has to face such a difficult illness. It is a comfort for those of us who have lost a child or grandchild. Also, it is supportive for the families who spend each day taking care of their child. It gives hope to all of us. My grandson, Jonathan Jaffe Burlina would have been one year old today. He was with us a short time but we will have his wonderful memory forever. Sincerly, Ferne Jaffe

Name:

jenn

Email:

pm121597@aol.com

Date:

22 Mar 2000

Time:

19:04:37

Comments

once again i am here re-reading stories and looking at all of the angels here - i come here often - somedays i laugh as i look through and see the cute little pictures - and then there are the times that i cry - thinking of how these sweet little angels left our arms much too soon - looking at their pictures seeing their sweet smiles and those big expressive eyes that seem to look into your very soul - i am so thankful that we have this place thanks to laura for creating it and to all of you for sharing your beautiful angels and their stories with us all - my thoughts and love go to you all always - brit-leigh's mom

Name:

mike drum

Email:

mikedrum@ev1.net

Date:

25 Mar 2000

Time:

02:16:38

Comments

I want to send out my prayers to all these brave children and God bless them all

Name:

Karen

Email:

jhkinternational@yahoo.com

Date:

06 Apr 2000

Time:

04:10:28

Comments

I lost a preemie to SMA nearly two years ago and have been mesmerized by the site and the stories. My heart goes out to all the families of these precious children and to the children as well, who fought with such courage to make it through just one more day. I have never been able to find a single library book about SMA but this website and some of it's links have been incredible. Thank you.

Name:

Stacye Carter

Email:

Stacye_Carter@msn.com

Date:

06 Apr 2000

Time:

23:31:34

Comments

My best friend has two children with SMA. I know from watching these two kids how special and time consuming they can be. Thank you for regconizing these special children.

Name:

Kelly

Email:

iancharles@itrail.freeserve.co.uk

Date:

10 Apr 2000

Time:

18:24:37

Comments

I gave birth to Molly on Tuesday 16th February last year. She was beautiful, lively and full of life. She didint have a loud cry and her legs tremored from 2 days old. I was told by health visitors and doctors this was possibly low blood sugar, and it was left at that. Being a new mum i believed them. In May I noticed a lump on Molly's back, She went in for tests and it was found she had a Kypho-scoliosis. We were also told she has some form of muscular condition. On November Molly underwent further tests and we were told that she had an undiagnosed neuromuscular condition. No one gave us a name for this, they just said she was unique. Molly couldnt crawl, roll and she couldnt move her feet, she lay in a frog like postion,but she tried so hard and she started feeding herself with the bottle, she was so happy all the time and nothing got her down. Her facial features werent affected at all. Physio and splints were helping Molly and every now and then I felt a piece of hope. She made me so proud. In January Molly caught bronchiolitis and needed ventilated. She got over this and the GP said her chest was the clearest he had ever heard it. I was giving Molly suction as required now. Three days later Molly was back in hospital and needed ventilated again. This time the doctors told me it was due to her condition. All this time they couldnt give me a diagnosis. Molly made it off the ventilator for her first birthday. On the 27th of February she died. I still dont know why or what. Reading through some of these pages, I recognise so many symtoms that Molly had. Molly was an angel the day she was born, and she will be an angel forever.

Name:

Jill

Email:

Date:

13 Apr 2000

Time:

14:37:13

Comments

I just wanted to say thank you for this wonderful page. My father lives with this disease making my life growing up frustrating and sometimes scary. To help myself and to enlighten a few others, I have writen a paper for my college english class. I mentioned this website and other students, all who had never heard of the disease, checked it out and were made aware. Thanks agains!

Name:

Jayme McKinley

Email:

jaeann11@hotmail.com

Date:

13 Apr 2000

Time:

15:08:50

Comments

Mother of StephanyJo Ann Noyce 04-30-87 to 11-04-90

I found this site from fsma.org and i would love to have some information about putting my little girl's story on this site.....I wish i had experienced the kind of support everyone has now....i felt so alone for so long.....now i'm at a place in my heart and in my life where i have a need to give encouragement to others ......catharsis for myself......i need to give back what she gave me..... to others. The pain is still so strong at times that looking through all these entries brings uncontrollable tears mixed with memories tucked away for so many years.....i feel her with me always.....but i feel a surge of strength and encouragement from her like never before......her story needs to be told.....her life needs to be celebrated.... I love you baby girl......Always my precious angel!!!

Name:

june mcdonald

Email:

dj.mcdonald@home.com

Date:

17 Apr 2000

Time:

02:27:29

Comments

Beautiful web site. My heart aches for all of these little ones and their parents.

Name:

Brandi Schmidt

Email:

kaos904@aol.com

Date:

17 Apr 2000

Time:

21:51:04

Comments

I was just reading the Guest Book and was so touched to see so many of my friends and family's names and messages. Kevin and I continue to be amazed at how kind all of you have been to us. You confirm our belief that "Special K" was, indeed, a very special angel. Thank you for sharing in our celebration of her life and grief of our loss. And once again, thank you, Laura Stants for your hard work and for helping all of us.

Love, Brandi (mom to Kourtney, SMA1, 2/1/99-12/2/99)

Name:

Jim Irwin

Email:

jei@netusa1.net

Date:

19 Apr 2000

Time:

20:34:19

Comments

Name:

R. Wayne Ammerman

Email:

wayne@glenndale.net

Date:

21 Apr 2000

Time:

16:49:49

Comments

Laura: You have done a wonderful thing creating this web site, it is absolutely beautiful and the music is superb. With every body's prayers, God will provide a cure in (His time) for this dreaded disease. I too miss Devon. May God bless you both.

Name:

Vincent G. Calicchia

Email:

VCalicchia@rpmcc.com

Date:

25 Apr 2000

Time:

11:13:39

Comments

My niece has SMA, so as you can guess, I feel deeply for all the parents who must battle through the pain and heartache of this genetic disorder. I just finished reviewing the research progress and looking at the pictures of the little warriors and my colleagues here at work at staring at me in amazement as I am reduced to tears. Keep up the great work and I intend to support you however I can.

Name:

Cathy Bender

Email:

Date:

27 Apr 2000

Time:

14:43:32

Comments

My thoughts and prayers are with you all...

Name:

Minister Laurentis Barnett

Email:

laurentisb@yahoo.com

Date:

28 Apr 2000

Time:

11:31:22

Comments

It is time that we start standing behind our youth supporting them in sickness and in health even if the are not our own children. In actuality, they are all of our children, why, because the are the leaders, presidents, preachers, teachers, doctors, lawyers, and parents of tomorrow and we must do everything we can to see that they live to see it.

Name:

ELIZABETH LEWIS

Email:

Date:

03 May 2000

Time:

15:28:46

Comments

THIS IS BEAUTIFUL WEBSITE...THANK YOU FOR THE INFORMATION ENCLOSED....LIZ

Name:

Mary K. Staberg

Email:

mkstaberg@webtv.net

Date:

09 May 2000

Time:

20:57:12

Comments

Dear Sammy's family, My heart goes out to you on the loss of your beautiful son. We lost our only grandchild to sma type 1. He was 5 months old, he died on March 27, 1998 at home in Visalia, Ca. We miss him terribly.

Mary

Name:

Chrissie Dearing

Email:

lucydesifan@yahoo.com

Date:

10 May 2000

Time:

09:56:40

Comments

What a beautiful site!

Name:

Michelle A. Morgan

Email:

Michelle_Morgan@doh.state.fl.us

Date:

12 May 2000

Time:

16:21:34

Comments

I am so glad that this web site exists. I work with parents with children who have moderate to terminal diagnosis. I've recently come across a family whose daughter has SMA. It is very hard for em to find information for them. They are looking for a support group in the Orlando area and to date I don't think one exists. I've been calling and emailing all over the place and have not been able to find out much. If there is any way you can help me please email. Thank you so much for your time.

Michelle Morgan Family Resource Specialist for CMS Orlando

Name:

DOROTHY TEUFEL

Email:

DTEUFEL@msn.com

Date:

28 May 2000

Time:

18:56:51

Comments

ITS WONDERFUL TO FIND SUCH SUPPORT FOR THE SURVIVORS OF SMA (THE PARENTS AND LOVE ONES) it BRINGS ME A SMILE WHEN I THINK OF ALL THE PERFECT ANGELS LOOKING OUT FOR EVERYONE. THANKS FOR THE REMINDER

Name:

Fran Reibman, CE

Email:

doghouse@advanix.net

Date:

31 May 2000

Time:

12:46:25

Comments

Love your page. You did a great job!

Name:

MUSTAFA CAY

Email:

mustafa_cay@usa.net

Date:

07 Jun 2000

Time:

18:24:31

Comments

I LIKE VERY MUCH ALL OF YOUR SITES!

WITH REGARDS,
MUSTAFA FROM TURKEY

Name:

Beatrice Hazzard

Email:

pjburns@infoblvd.net

Date:

11 Jul 2000

Time:

22:36:30

Comments

I just found this web site today. I really think its great. I have been needing to hear about other SMA families. I have been feeling like my son Ian was the only one around. Which I think he is in the small town of Hornell, NY USA. No one has even heard of SMA before. Ian has Sma 2. He can walk but falls alot and has a lot of trouble to get to standing position. Respiratory is the biggest problem I have right now. He can scare me at time with his respiratory infections. Oh by the way Ian is 21\2 years old. He's full of happiness and is very argumentive. He is my second child. I have a four year boy named Mitch, he is "SMA-FREE" thank God. I am hanging in here a little better thanks to web sites like this one. I live day by day thinking about my little angle, especially at work everyday. He wants to sleep with me and hardly lets me out of his sight when I pick him up from day care. "I need my mommy" he always says. I try to tell him different but he argues with me. Sorry for going on and on. thanks for this web site.

Name:

Arlene Lucovich

Email:

allucovich

Date:

20 Jul 2000

Time:

13:42:10

Comments

Dear Binning Family, you all in our Prays and Iam going to put you all on the pray list at our church we love you all very much Mrs.Binning I called Donna on my celler phone and Talked to Ashely and she told me how to look on the web about Brooke is a very cute little gril and Please E-Mail me. Love,Arlene here is my E-Mail adderss allucovich@yahoo.com

Name:

Pat Osborne

Email:

posborne@engs.com

Date:

31 Jul 2000

Time:

23:39:07

Comments

This is really a well done and informative site. I pray that God will bless and comfort you all. My great niece, Amanda Harris, is listed here.

Name:

raider

Email:

raider@bettanet.net.au

Date:

01 Aug 2000

Time:

22:16:20

Comments

I am not a parent yet but do hope to be soon, but i do care for a lot of children.

I found that your page was wonderful.

They really are angels.

Thankyou for the experience, it brought tears to my eyes. They were truly beautiful children. The memories are important now.

Name:

Peggy Marsh

Email:

plhmarsh@webtv.net

Date:

03 Aug 2000

Time:

22:41:11

Comments

My grandson Michael Kelley age 3 has SMA type 2. We all are hoping for a cure.

Name:

Linda (Ian's Grandma)(actually Great Aunt)

Email:

lindaburns3@home.com

Date:

14 Aug 2000

Time:

21:56:32

Comments

I think it's a wonderful site for all our little angels. Hope a lot of people read it and understand all the work and hope that these little people need with this disease. I know we are trying very hard to learn more about it.Especially my niece.Sharing with other parents with children like Ian is helping her. Keep up the good work. Thank you, Linda

Name:

angi burns

Email:

angeliqueburns@home.com

Date:

14 Aug 2000

Time:

21:58:11

Comments

my nephew is Ian Paul Lewis! he is the sweetest, happiest little boy. the way he acts you would never believe he is ill!

Name:

Monika

Email:

monika_bar@hotmail.com

Date:

17 Aug 2000

Time:

18:46:38

Comments

Beautiful and informative site. Thank you for your efforts to educate people about this illness.

Name:

Barbara Moczulski

Email:

barb@execulink.com

Date:

27 Aug 2000

Time:

23:02:37

Comments

I came across your web site by accident or not? It is informative and sensitive. I will continue to visit the site and pass the work on.

Name:

Michelle Gagne

Email:

homeimp@ntl.sympatico.ca

Date:

11 Sep 2000

Time:

14:16:20

Comments

I really enjoy your book on s.m.a. You see I had a little girl with s.m.a. Here name was Erica. She was 9 month old when she past away. Its pretty difficult for us, we still think about her all the time.If you feel like talking to me I would really appreciate, or if you know someone who would like to talk to me I've would love that.

Name:

Jennifer Weidner

Email:

Red2965@cs.com

Date:

14 Sep 2000

Time:

12:54:12

Comments

What a beautiful place i know firsthand about SMA my grandson had it he was only 4mos.old when he died on 9/18/98 he was my youngest daughters 1st child he live here with us i helped take care of him everyday of his life i wish i had a computer before this so i could have had more information on this dreaded disease i still have so many unanswered ones to this day so i hope i can find the answers that i need now how do i go about getting a page for my grandson here this is all new to me and i need some help thank you for the time you have spent reading this Jennifer Weidner(Granny)

Name:

Dean Sharpless

Email:

deanos@uplink.net

Date:

20 Sep 2000

Time:

05:15:52

Comments

First I ever heard of the disease. Has any child ever been admitted to one of our 22 Shriners hospitals? Transportation & hospital care is free.

Name:

Tom Jennings

Email:

tomj4_98@yahoo.com

Date:

08 Oct 2000

Time:

03:10:00

Comments

Thank you for the creation of you site. We have 3 children, our son Tyler, the youngest, is 3 years old and has SMA Type 2. Some other good places for parents and relatives to look for help with coping are, the make a wish foundation, the MDA and any number of support organizations, we belong to Families of SMA. We went to the make a wish foundation web site and applied for our son to be able to make a wish. Our wish of course is that someday soon there will be a cure. But till that day, we can only try to make his life better. He asked the nice people from make a wish if he could go to disney land. So we'll all be going there in the summer. He is in his second year of school. He is in a head start program in the public school here. He is very intelligent. Always the center of attention, not the fact that he's in a power wheel chair. But because of how he brightens a room when he comes into it. Let us all be strong. The children are the future. Again.. Thank You for the site. Any of you who want to email me, please feel free. We would be happy to share any information that we have or help point you to other resources. Thanks for reading. Tom & Michelle Jennings

Name:

Emily and Tyson

Email:

ltl_dragon@go.com

Date:

27 Oct 2000

Time:

02:15:35

Comments

You have a very nice website. Even though losing a baby to SMA type 1 has been the most heart breaking thing we have ever been through, we still thank God for blessing us with our beautiful baby boy James Cayden Poole. He lived to be nine days old (March 23, 2000-April 1, 2000). Our hearts go out to all those who have gone through this before, are going through it currently, and those who will in the future. Good luck and lots of love.

Name:

Carolyn DeMoss

Email:

demossj@netcnct.net

Date:

30 Oct 2000

Time:

15:00:21

Comments

A friend has a grandson with this condition and when I asked her what it was, she directed me to this web page. I had no idea, not even a clue that so many precious little ones were braving such odds to survive. Thank you for the information and the touching way you have shared. Carolyn

Name:

Sharon Bryant

Email:

Sharon.Bryant@SSA.GOV

Date:

31 Oct 2000

Time:

18:12:43

Comments

I was truly amazed when my oldest daughter located this website on the computer. I lost my middle daughter, Nicole, a twin to Werdnig Hoffman in June 1999. I am currently getting information together so that Nicole's story may also be added to this website. Thank you for allowing us this opportunity to share the story of "our small angel" with you.

Name:

Pat Davis

Email:

admsgrdn@aol.com

Date:

01 Nov 2000

Time:

23:45:00

Comments

I too am the mother of an SMA angel. I want so much for a cure to be found so that others never need experience the loss of their precious child. I would like to thank you for sharing information about SMA so that others can understand. I would like to invite you to visit my memorial site: Adams Garden. Feel free to stop by!

www.adamsgarden.homestead.com

Name:

G King

Email:

ggk@aol.com

Date:

03 Nov 2000

Time:

20:26:29

Comments

A fitting tribute to all the little angels who have suffered and died from this incurable disease.

Name:

dillon strickland

Email:

sgracie715

Date:

08 Nov 2000

Time:

20:00:03

Comments

hi am dillon i have sma 2 i live in cortland ny i have never walked never will but am happy am in1st grade my mom crys about it but i cry for the kids that dont have the chance to grow up and go to school i blesseveryone of themand pray every night for a cure may be some day it will be answered. love dillon

Name:

Keondra CUNNINGHAM

Email:

kekekunningham.@aol.com

Date:

11 Nov 2000

Time:

22:42:23

Comments

We visited the web site to see Nicole Pruitt. We are friends of hers. We just wanted to let her know that we love her and miss her very much.

Love Always, Keke,Akeem and Molly

Name:

Marc and Ann

Email:

TheMcCartys5@gateway.net

Date:

13 Nov 2000

Time:

13:37:26

Comments

You have a very beautiful site in memory of your precious angel's. Your children have really touched our hearts and souls. Hugs and God Bless...

Name:

Krystal

Email:

kryst04@yahoo.com

Date:

13 Nov 2000

Time:

15:40:34

Comments

This website is a great idea, in the memory of all these little ones.

Name:

emily

Email:

Date:

30 Nov 2000

Time:

19:22:21

Comments

This is a great web-page!

Name:

Email:

Date:

01 Dec 2000

Time:

14:18:51

Comments

The web page is wonderful and so touching. These children are so blessed to have such loving families as the families are also blessed by such special children. I know you will all have jewels in your crowns when you get to heaven!!!

Name:

Laura Marsh

Email:

lmarsh@frontiernet.net

Date:

01 Dec 2000

Time:

15:00:25

Comments

I visited this site to see Conner Riggs. His whole family has been special to me for many years and he's the reason I've learned about SMA. Conner has been a blessing not only to his family but to his whole community. We all care so much for him and for all of the special Angels who are stricken with this horrible disease. I have no doubt that GOD has a special place in heaven and a very special plan for these beautiful children. I'm praying for you all.

Name:

Tara

Email:

millman@attglobal.net

Date:

05 Dec 2000

Time:

17:37:40

Comments

This site is a nice place to to keep the memories alive of loved ones. It has been a year now since my dear friend's angel went to heaven. God bless her, her husband, her whole entire family and may the love and warmth their angel brought them fill their hearts during their sad times.

Name:

Vickie Case

Email:

vicase@hotmail.com

Date:

06 Dec 2000

Time:

20:29:37

Comments

I am here to support my friend Kim Winward and her wonderful darling children nicolas and gidget!

Name:

Joan Bares

Email:

jbares@msubillings.edu

Date:

07 Dec 2000

Time:

22:03:03

Comments

I lost a child in 1981 from Werdnig-Hoffman. He would have been 19 years old this month of Dec. 2000. We both have a common German background with a common ancestral name, Pfau, from Heilbronn Germany. I still talk to him and ask him to watch over and guide his brother and sister, grandparents etc.

from Montana

Name:

Email:

Date:

10 Dec 2000

Time:

18:54:26

Comments

What more can be said of these precious Angels from God? As I sat here and read thru the sites, I thanked God that I was so richly blessed with healthy Grandchildren at this time. These children are a loan from God to people who will find that their time here had richly blessed them in some way. All of God's children are beautiful and when something is wrong with one of them, God cries with us. May God bless each and everyone of you. Remember always that you are only a breath away from your precious *Angel* and they are safe in the arms of God.

Name:

john & dora

Email:

jhajr@cstel.netM

Date:

18 Dec 2000

Time:

21:42:06

Comments

Merry Christmas little Angels

Name:

debra newbold

Email:

dnew35228

Date:

22 Dec 2000

Time:

13:19:03

Comments

may God bless each of you

Name:

Barbara Brooks

Email:

babs4him@hotmail.com

Date:

26 Dec 2000

Time:

11:59:29

Comments

Loved your web page.

Name:

Pam Moon

Email:

pammoon@hotmail.com

Date:

04 Jan 2001

Time:

11:12:50

Comments

I know about your site through a friend of Conner.

Name:

ayreonia

Email:

tommygurl1371402

Date:

09 Jan 2001

Time:

17:19:22

Comments

this is a great web page!!!!!!

Name:

Carol Yawn

Email:

cyawn@bulloch.k12.ga.us

Date:

18 Jan 2001

Time:

16:13:59

Comments

I work with a beautiful lady whose grandson has SMA and she told me about this web page.

Name:

Ashley Hines

Email:

ashleyhines@yahoo.com

Date:

24 Jan 2001

Time:

11:14:04

Comments

What a wonderful way to help so many people with this dreaded disease. Life is so precious, especially the lives of children! Ashley Hines

Name:

Sandy Mijnendonckx

Email:

sandy.mijnendonckx@wol.be

Date:

26 Jan 2001

Time:

12:45:32

Comments

It's a site with a lot love in it and that's wonderful.

Name:

Mary Falzarano, OTR/L

Email:

mary@megadv.com

Date:

03 Feb 2001

Time:

12:03:12

Comments

What a wonderful and helpful site. I'll be back and will share this with the families, educational staff and other therapists who work with our children with SMA.

Name:

Mariann and Peter

Email:

granlunden14@privat.dk

Date:

05 Feb 2001

Time:

15:20:44

Comments

Thank you for this web site. We were searching for information about SMA, when we saw this site. We live in a small village in Denmark (Europe) No one has so far been able to tell much about SMA, that's why we are searching for more.

Today (5. february 2001) our son Andreas is 5 weeks old. Three days ago the doctors gave us the worst chock anyone can ever imagine. Our little son has Werdnig-Hofman's disease, and he will die before he reach the age of two.

None of us knew, that we carried this disease, and we have never heard of it before. If you know anything about where we can look for further information please let us know.

Mariann and Peter

Name:

Michaele Aldridge

Email:

michaele@glenndale.net

Date:

08 Feb 2001

Time:

15:38:00

Comments

Just welcoming your new angel girl Kaylee and remembering your angel boys Devon and Sidney. Thank God He puts friends together to share all of life's joys and sorrows. Michaele,Greg, Noah and Grace

Name:

Christopher Webb

Email:

webb_chris84@hotmail.com

Date:

11 Feb 2001

Time:

14:48:48

Comments

Keep up the good work!! May God be with you and them in everything that you all do..

Name:

Laura El-Disi

Email:

L_disi@yahoo.com

Date:

14 Feb 2001

Time:

10:50:29

Comments

I am a friend to someone who just had a baby born with SMA and they are devastated with the news. Not knowing where to turn or what to do I am in search for them. I hope to find some soothing news for them. So far no luck. I am very happy to see this site I am going to send it to them and hope that they will enjoy it as much as I did. I also hope that they will join you. This was a very nice site. I thank you for sharing. With the help of God all the parents with children with SMA will find peace and understanding. Thank you again Laura

Name:

Hugh Stewart

Email:

hugh.stewart2@ntlworld.com

Date:

18 Feb 2001

Time:

10:35:34

Comments

I have four kids two of whom suffer from Sma one had type 1 and passed away last September at the age of 3 years the other has type 2 and is 11 years old. This is a great site to visit.

Name:

sondra

Email:

babe0930@aol.com

Date:

07 Mar 2001

Time:

20:35:16

Comments

this is a truly beautiful way to inform people of this disease and to keep the memory of your beautiful children always..........a compassionate friend

Name:

Sharon D Bryant

Email:

Sharon.Bryant@SSA.GOV

Date:

09 Mar 2001

Time:

18:27:15

Comments

Laura, Just writing to say that I am finally getting Nicole Pruitt's story together so that it can be added to her website. I decided to write today because today is Nicole and her twin sister's birthday. I am happy, but then again my heart cries out. I miss her so very much, but she lives on in my heart. Thanks again for allowing me the opportunity to share the story of my "small angel" with you. I told her sister this morning when she was looking so sad, to smile and be happy, because Nicole was laughing at her, and that even though we miss her so, she would not trade places us. "God truly smiled on us!"

Name:

Clare Lea

Email:

Clare.lea@btinternet.com

Date:

10 Mar 2001

Time:

05:41:03

Comments

Your Web Site is beautiful. I have a daughter with Sandhoff Disease and fully understand what it is like to have your life touched by such a rare disorder. God bless all of our special angels.

Name:

Doreen

Email:

hmk610@yahoo.com

Date:

12 Mar 2001

Time:

18:58:16

Comments

This site is very nice. My daughter died from SMA1 and my other daughter is 11 and has SMA2. The one we lost was very hard for us but we will still never forget the good old days!

Name:

Sarah Bruner

Email:

brunerjs@medt.com

Date:

16 Mar 2001

Time:

22:22:20

Comments

What a beautiful site!! I'm so sorry to all the children and families hurting because of this disease.... I lost my sister Ashleigh to a rare blood infection called STSS. Please take care and Hugs to You All, Sarah/Ashleigh's Big Sis

Name:

ivana

Email:

Date:

18 Mar 2001

Time:

11:58:47

Comments

What you're doing is wonderful! God bless you!!!

Name:

Gail Green

Email:

Date:

17 Apr 2001

Time:

14:05:20

Comments

Mother of one passed on.

Name:

SILVIA MARTINEZ

Email:

Date:

27 Apr 2001

Time:

13:12:06

Comments

i just wanted to say how cool this web site was i think its so nice that yeah and us never forget about our  little sma angels we always have them in our heart and now we will never forget about them and i will just like to i love you silvia martinez

Name:

Pat Seay

Email:

seaytrish@aol.com

Date:

28 Apr 2001

Time:

09:15:23

Comments

My granddaughter, Tyluni Hunter from Nashville Tenn has also been diagnosed with SMA. I think this website is truly a blessing for the victims and families of the kids with this deadly disease. Your website offers comfort and knowledge. Tyluni's parents are Roy and Tyese Hunter. They have really been helped with information from this site. May God continue to bless and keep you.

Name:

Melissa Basham

Email:

Melissa Lee 69@aol.com

Date:

12 May 2001

Time:

16:49:14

Comments

I think the web sight is wonderful! I have a cousin with SMA. She is my lil angel. Skylar is beautiful. She is part of this web sight. I love you Sky!!!

Name:

Pamela Large

Email:

pamlarge@theriver.com

Date:

12 May 2001

Time:

23:50:42

Comments

On September 23, 1985, my husband and I had a beautiful daughter, Deidre Kay, who had the most bright and smiling face you could ever see. She was diagnosed with SMA Type I in March, 1986 during a bout with pneumonia. When the pneumonia cleared, the neurologist did some testing and found that she had the horrible disease. We lost her a month later on April 18, 1986. My husband and I have another daughter, Candace Marie, who is now 18. My husband and Candace both have a neurological disorder called neurofibromatosis. I am lucky that their type is external and not internal to effect their vital organs. The power of the Lord is what keeps us strong and the many family and friends that have prayed for us. SMA is a horrible disease and we must all do what we can to fight it and to educate others about it. My husband and I are committed to fighting this through donations every payday through payroll deduction and every year during the Labor Day telethon. I encourage all to do the same. Our thoughts and prayers are with each and every parent, brother, sister and grandparent out there who have lost a loved one to this deadly disease. Stay strong and keep your faith. We will all see our SMA Angels again someday. Please e-mail me for info or support. Thank you.

Name:

Sherry Herauf

Email:

sherauf@yahoo.com

Date:

16 May 2001

Time:

15:57:38

Comments

The pictures of Conner were beautiful. It is a pleasure working with him and getting to know your family. Look forward to seeing him again.

Name:

LINDA STAPLETON

Email:

Date:

23 May 2001

Time:

09:40:36

Comments

THIS BOOK WAS A REALLY GOOD IDEA FOR ALL THE FAMILIES OUT THERE THAT ARE HAVING TROUBLES AND LOSING THERE BABIES OVER SMA. EVERY FAMILY OUT THERE HAS MY PRAYERS, ALWAYS AND FOREVER.

TAKE CARE, LOVE AND PRAYERS. (SMILE ALWAYS)

Name:

Angie Hudson

Email:

carlyswings@hotmail.com

Date:

02 Jun 2001

Time:

19:51:47

Comments

My daughter, Carly Beth, passed away Oct. 3, 2000 from SMA Type 1.She was diagnosed June 30, 2000 at age 6 months. We had only 9 months to create a lifetime with her and I would do it all over again just to hold her one last time. I pray they find a cure SOON. MAY GOD BE WITH ALL THE OTHER FAMILIES DEALING WITH THIS HORRIBLE DISEASE.

Name:

Judie Lovelace

Email:

jllovelace@hotmail.com

Date:

21 Jun 2001

Time:

19:09:43

Comments

This is such a beautiful site. I hope all will visit like I did and see just what God has done with these beautiful children. Hopefully God will someday find a cure for this terrible disease. May the Grace of God go with each and every parent who has a child with this disease.

God Bless You for such a helpful insight you have put on this internet.

Name:

tracey

Email:

tmjdd@yahoo.com

Date:

22 Jun 2001

Time:

00:54:50

Comments

This is a very touching website. I have met one of your ANGELS. and she is definitely that. she makes me realize how truly precious life is.

Name:

pat k

Email:

granyk10@hotmail.com

Date:

24 Jun 2001

Time:

14:05:20

Comments

my grandson also has sma, the pain that families feel watching them get weaker and weaker.

Name:

Jennie

Email:

Red2965@cs.com

Date:

26 Jun 2001

Time:

10:51:27

Comments

Laura you are a true angel i thank you from the bottom of my heart for what you have done for Nicholas' site You have put up with me for a long time getting this site up there is still more but it is hard at times for me but I'm working real hard if this helps people realize what a horrible disease this is and maybe we can find a cure so we grandparents and parents don't have to go though this I thank God for helping me find this site it has helped me more than anything else to have here to go to and look at him even though he is all over this house God Bless you Laura Love Jennie Nicholas' Granny

Name:

rachel

Email:

rachel@prohigh.com

Date:

27 Jun 2001

Time:

11:57:48

Comments

this site is great i loved it good friends of mine that i have lost contact with PAT & DARWIN HUNTER-KEISER,parents of riley(angel) and parents to roman connor and summer skye please if anyone knows them please tell them that rachel mom of cathlyn angel is looking for them thank you and may all of our children be playing in the biggest park in heaven. in cathlyns memory rachel

Name:

Anki Karlsson

Email:

majus@telia.com

Date:

27 Jun 2001

Time:

15:24:13

Comments

I'm happy to have find this site. I am from Sweden and have no problems reading English, but to find the right words and I think itīs "spell"???? them right is hard.

My little girl Isa died just 3 months ago from SMA1. She was 8 months old, and I miss her so much!! We didn't now what was wrong before she died. We had been to a "neurologist" just 3 days before we find her in the bed at morning. I know there is no cure, but why didn't anybody listen to me, I had asked for help in 2 months. Hope you could read my bad english. Never lose hope! Hugs Anki in Sweden

Name:

Debi

Email:

jusritetmd@aol.com

Date:

30 Jun 2001

Time:

18:51:57

Comments

Thank you Laura for your advice and support thru this awful time. You have given me courage and now I am on a mission.

Name:

Kathy

Email:

Date:

05 Jul 2001

Time:

13:32:14

Comments

I'm a new member of PWOTW and am surfing around the webring and thought I'd drop in and say "HI!" You have a great site and I enjoyed my visit. You have put so much work into your research of SMA. I loved your intro page. Very, very nice! C'mon over to my place for a visit soon and don't forget to sign my guestbook before you leave! :-)

~Kathy~ Welcome To Kathy's Country Home!

"http://www.geocities.com/chattykathy01/countryside.html"

Name:

Debra J. Davi

Email:

debra_j_davi@yahoo.com

Date:

10 Jul 2001

Time:

23:20:33

Comments

This is beautiful!!!!! You've done a wonderful job. God Bless you and ALL THE CHILDREN.

Name:

Richard & Karen Negrin

Email:

rnegrin@morganlewis.com

Date:

17 Jul 2001

Time:

20:57:44

Comments

We were very impressed with your very inspiring web site. We live in Philadelphia and our one year old daughter Abigail has SMA I. We welcome the exchange of any information and ideas and would like to be included in your web site. We are being treated at Children's Hospital of Philadelphia and would like to gather as much information as possible regarding treatment, nutrition, etc. Thanks. We are also planning a fundraiser and would appreciate any help you could offer.

Name:

Sherry WWB Co-Founder

Email:

wwbsherry@yahoo.com

Date:

18 Jul 2001

Time:

22:34:18

Comments

Your site is lovely and much needed ;) Thank you..... You are cordially invited to join http://www.geocities.com/womenwhobelieve Women Who Believe.   Women Who Believe is a new internet group devoted to women. Devoted in the things we all believe in. Friendship, Trust and most off all, ourselves. Women Who Believe is a place to have laughs, meet new friends and make lasting memories. We have several wonderful and unique committees for members to become involved in. We are looking for several staff members to become a part of this new and refreshing group. We do hope you will consider joining our group or our webring.

Name:

Scott & Rose Morrison

Email:

rose_morrison@bigpond.com.au

Date:

30 Jul 2001

Time:

07:36:24

Comments

We lost our first born little angel Mercedes Denae born 11 October 1999 five days later. Without knowing we both have the SMA Type 1 gene. We've since had a baby boy Branden Anthony born February 2001 who is only a carrier (hopefully). He is very strong and very active at this stage. It's because of Mercedes that we have even become aware of our being carriers. She will always be our gift and we miss and love her very much.

Name:

Scott & Rose Morrison

Email:

rose_morrison@bigpond.com.au

Date:

02 Aug 2001

Time:

08:06:58

Comments

Dear Laura and Family (and Devon in Spirit)

I must apologize for not complimenting you on the best website I have ever seen! I signed the guest book without viewing your site. What courage you have to have survived such a tragedy. Devon is absolutely gorgeous and so brave. Looking at his hospital photos got the better of me as my angel Mercedes was attached to just as many instruments! She died in our arms, quietly and peacefully, closed her eyes and then moments later opened them, stared at both of us and said goodbye. Her short but meaningful existence with be treasured for ever. Our thoughts are with you all. We're sure that all of our SMA angels are playing together in God's garden.

Love Scott and Rose Morrison (Geelong, Australia)

Name:

leann

Email:

leann@usol.com

Date:

11 Aug 2001

Time:

21:54:25

Comments

i have never heard of sma, but i am sitting here crying for all of your angels and for the ones that they left behind. i have a granddaughter who is 2 and i cannot even begin to imagine what it would be like to lose her to something as horrific as sma.

Name:

Gwen Barry Blumberg

Email:

gwenb@visto.com

Date:

18 Aug 2001

Time:

20:25:43

Comments

This is a beautiful site. Molly Kennedy is my cousin and it is wonderful to see her life and so many other children's lives celebrated this way.

Name:

Debra Myers

Email:

Date:

02 Sep 2001

Time:

01:03:34

Comments

My 11m old daughter passed away from SMA type 1, I've been looking on the web for some type of help. Thank you so much.

Name:

Laura Stants

Email:

laura@our-sma-angels.com

Date:

02 Sep 2001

Time:

21:49:06

Comments

Debra, I'm so sorry for the loss of your daughter. If you'd like to talk or have any questions you would like answered about ANYTHING, please send me an e-mail at laura@our-sma-angels.com.

Name:

Karen Tingler

Email:

redmystic21@yahoo.com

Date:

10 Sep 2001

Time:

14:08:32

Comments

I have a great niece just four months old her name is Adora. We just found out that she has this disease and everyone is taking it very hard. The mother is in denial because she is having a hard time. I would like to say that would you pray for Adora and her mother and father and big brother Cody. Thank you

Name:

Mindi Watson

Email:

Mindi_Watson@yahoo.com

Date:

12 Sep 2001

Time:

21:44:25

Comments

Like many other people I had never heard of SMA and was shocked to hear that it affected so many children. My niece is Adora Brooke Lewis and she is 4 months old. When she was born I was there with my sister Terri which makes her even more special to me. I felt like the wind had been kicked out of me when my sister, my mother and myself went to UK Medical Center and were told that they believed that she had this disease. I can't even begin to know what to say to my sister. We have hope that maybe just maybe they have made a mistake and we are praying that the lord will give us a miracle and help medical science to find a cure. For all the families that have lost children to this disease I am truly sorry for your loss. Please say a prayer for my little angel Adora, I will be praying for all our SMA Angels..Thank You

Name:

Kelly

Email:

kellyryoung@hotmail.com

Date:

15 Sep 2001

Time:

12:09:40

Comments

I have truly enjoyed the SMA website. The children featured are so beautiful. I keep this site bookmarked so I can visit and see them when every I want to. Keep on fighting little ones

Name:

Janine

Email:

Hoganjanine@hotmail.com

Date:

02 Oct 2001

Time:

00:58:15

Comments

Hi, I've visited here before but never left a comment. It's beautifully done and a wonderful memorial to the brave children who've left us too soon. Our daughter Chelsea died almost 18 months ago now, just before she was 11 months old. I never knew there was anybody out there when we were going through everything. We were so numb when we were told what she had, I didn't even try to reach out until after she died. Nobody knew anything about SMA, I found myself teaching medical staff about her disease every time we had to admit her to hospital. We now have another girl, 5 1/2 months old and SMA free, and we marvel at her strength. Cassandra looks so much like her big sister and I know in my heart the two girls know each other. Our new baby was due on Chelsea's birthday but thankfully came 2 1/2 weeks early. Anyways, thanks for listening. Though it's been a while, we still miss Chelsea so very much. How I wish we could have her back! Keep healthy, Janine

Name:

Melissa Fontenot

Email:

cowgirl17_99@hotmail.com

Date:

09 Oct 2001

Time:

21:03:36

Comments

Hi My name is Melissa and my daughter was diagnosed with sma 1 when she was 5 months old. She is 15 months old now. She is on a ventilator and she is the happiest baby I have ever seen in my life. I love her so much and she has brought joy to so many lives. She was born august 1st 2000 the same day my twin brothers were born and passed away. I love her so much and enjoy her if like she was not sick. She has made my life change in so many ways and i thank God every day for my wonderful, smart little Kaylee. If any of you care to e mail me feel free. thanks

Name:

Terri Lewis

Email:

Date:

10 Oct 2001

Time:

11:22:20

Comments

Hello i am the mother of a 5 month old newly diagnosed at well child exam at age 4 mos. she currently is doing very well thank the Lord. i wonder if anyone else started the same way and if so i would love to hear from you. i don't have an email address yet but if you would like to write me i would greatly appreciate it. My sister has an email address you can use also it is mindi-watson@yahoo.com the - is an underscore but of course i cannot find it on this computer- sorry! i have a lot to learn- anyway my heart goes out to all of you and you will all be in my prayers. i look forward to hearing from you soon!!!--My daughters name is Adora Brooke she is my angel!!!

Name:

Joanne Forstall

Email:

angel30398@aol.com

Date:

10 Oct 2001

Time:

17:47:14

Comments

Hi...just thought I would come and have a good cry. These children are all so adorable. My daughter is Bridget and she became an angel on the first day of Spring, March 20,1998. God Bless you all! With love...Joanne

Name:

Jeanette Matney

Email:

taz_boy20_99@yahoo.com

Date:

15 Oct 2001

Time:

20:45:42

Comments

My heart goes out to all the parents and children with this disease. My prayers are with you all.

Name:

Alexandria Bell llSuber

Email:

tekabell@hotmail.com

Date:

25 Oct 2001

Time:

23:48:59

Comments

I am grateful to have found your website. My daughter has been diagnosed with werdnig-hoffmans disease. Her doctor said she would not live to se five years old, she is now eleven.  She has severe scoliosis. Please pray for me and my family.

Name:

Amy Dopson

Email:

Lady_Brendana@unicorn-ventures.com

Date:

26 Oct 2001

Time:

21:21:15

Comments

Hi, I am also on the phenomenal womens web ring and was stopping by for a visit. Your site is very nice!  I would like to trade links with you. If you would like to trade links then stop by my site and submit your site information on my Exchange Links page  "http://www.celticways.com/amydopson" 

Name:

Kylee

Email:

joshtw@tpg.com.au

Date:

29 Oct 2001

Time:

06:08:46

Comments

Dear Laura,

Thank you for showing us the beautiful images & memories of so many gorgeous children. We have only recently lost our Son Josh to SMA. We feel we were so very blessed to have him if only for a short time. Josh was only 7mths old when we lost him. Reading about all the other Angels has only made us appreciate our Josh so much more. Thank you.

Name:

LadyPagan

Email:

pagan@comteck.com

Date:

04 Nov 2001

Time:

17:51:58

Comments

A very well done site, of a horribly sad disease. These things should not happen.

Name:

Mark Hendry

Email:

Markymark181@hotmail.com

Date:

07 Nov 2001

Time:

22:02:33

Comments

I have been so very touched and impressed by the love and devotion shown by my friend Kim and her husband John to their children. I keep their family in my prayers often and will extend that to all of yours. Keep the faith the Lord hears the prayers of his children,I know it.

Name:

cathy gentry-walker

Email:

cwalker@yadkincountydss.org

Date:

08 Nov 2001

Time:

14:02:34

Comments

MY GRANDSON IS AWAITING THE RESULTS OF A BLOOD TEST FOR SMA. I'M TRYING TO LEARN ALL I CAN AS WE HAD NEVER HEARD OF THIS DISEASE BEFORE. I APPRECIATE YOUR WEB SITE.

Name:

Skarleth Breton

Email:

Date:

10 Nov 2001

Time:

17:52:34

Comments

Thankyou Laura for allowing me a place to share my angel Evan with the world!

Name:

SUSIE PAYNE

Email:

susieq@dvdol.com

Date:

11 Nov 2001

Time:

21:13:22

Comments

I would like to say that this website is a very emotional site to visit. I am trying to visit all the sma angels websites. I just created a website for my nephew that died from SMA and I would like to thank Laura Stants for helping me and making it so beautiful. Laura you are a very special person. Susie Payne

Name:

Jennifer

Email:

amomto3grls1boy@aol.com

Date:

13 Nov 2001

Time:

01:26:56

Comments

Your pages are absolutely beautiful and devastating. I am so sorry for the losses you have or may have to endure. Your children deserve life!!! MD runs in our family and I was trying to find some information on it--I got more than I ever thought possible. Thank you for educating the public and for sharing the stories of all your very beautiful and special children. God Bless you all!!

Name:

Amanda Spencer

Email:

spencer@stlife.byu.edu

Date:

17 Nov 2001

Time:

19:35:29

Comments

Thank you for inviting me to this site. It's beautiful. I wish you all well.

Name:

Kristy

Email:

carver44@msn.com

Date:

30 Nov 2001

Time:

17:50:44

Comments

Mother of 4 year old with sma I/II. What a beautiful site.

Name:

Shannon Rodriguez

Email:

Date:

01 Dec 2001

Time:

10:23:35

Comments

This website is great. My sweet little Adora Brooke Lewis (a friends little girl) was diagnosed with SMA Type 1. When I think about her I am speechless. She is so beautiful and happy, I am so glad God placed her in my life because she is one ANGEL I will never forget. I am praying and BELIEVING for a miracle from God for all SMA Angels. I have a two year old daughter that I thank God for everyday and my heart goes out to each and every mother experiencing this disease with their child. Your children are one of my top prayers. I was diagnosed with Lupus in March of 2000. I was almost in renal failure and had to go through chemotherapy and high doses of steroids. Now there is NO sign of disease activity in my body - it is a MIRACLE from God. I say only to prove to each of you that God is capable of miracles no matter how bad a situation looks. My prayers are with each of you angels and your families. Love Shannon

Name:

Sharon La Gue

Email:

ms_sharri@hotmail.com

Date:

01 Dec 2001

Time:

19:12:27

Comments

This message is for miss wheelchair 2001-Nicky, who recently went onto a higher and more heavenly plain. May she find peace forever and may her wings in heaven help her to dance in joy. God bless you and all of those who are with you , who have had to go through the same perils and who are now with God.

Name:

DEE

Email:

DLHBDC@aol.com

Date:

05 Dec 2001

Time:

23:55:04

Comments

THESE ANGELS ARE IN MY PRAYERS.

Name:

Rich Clingman

Email:

Rich@DoctorBach.com

Date:

08 Dec 2001

Time:

17:58:52

Comments

I've just added a guestbook to the DoctorBach.com website. Please stop by whenever you get a chance.

Rich Clingman, Webmaster www.DoctorBach.com

Name:

michael murphy

Email:

murphdog0352@aol.com

Date:

09 Dec 2001

Time:

19:19:58

Comments

awesome site, hope alot of other people get to see it and learn something.

Name:

Shelley

Email:

Shelleyrobinett@hotmail.com

Date:

10 Dec 2001

Time:

12:08:07

Comments

This site is Great! Mom of Trevor Robinett, 3 1/2, SMA II/III!

Name:

Corla King

Email:

king@greenepa.net

Date:

10 Dec 2001

Time:

18:55:20

Comments

Dearest Laura. Thank you for this beautiful site that we can come to and find some kind of understanding of what has just happened in our lives. I am the grandmother of Shane Wesley King. He was born April 11, 2001 and passed on to be with Jesus September 27, 2001. We are a very close family and I was with Shane almost everyday of his short life. He was my first grandchild. His father (my son)Mike King and his mother Holly King (the most beautiful, gentle, sharing woman I know)are so lost at times. I want so badly to take their pain, but that isn't how life works. I can only be there if they need me and I always will be. Anyhow I just want to thank you for such a beautiful place to come to (I wish it didn't have to be here) and share. If anyone wants to email me they can. May God bless everyone. I am praying for the cure of this and all diseases. All my Love Corla

Name:

AL ZWEIG RN

Email:

alz@firstatnursing.com

Date:

12 Dec 2001

Time:

15:02:43

Comments

For those who fight the good fight God has a special place. For those who are endeared in the heart of a sick child are endeared in the heart of God himself. No trial is so hard, no suffering so great as bend the will of those privileged to see the Lord in the eyes of his most precious and fragile children. Whatever sacrifice, whatever hardship.... Whatever it takes........to win. Not for glory, not for fame, but for the smile seen in the eyes of a child. What greater calling is there then this.... God bless you all and never EVER give up. BIG AL

Name:

annelies

Email:

anneliesje84@hotmail.com

Date:

24 Dec 2001

Time:

15:57:27

Comments

hello everybody I am a seventeen year old girl from Belgium. I have just looked at al the angels on this site and I just love them all. It is the second time I looked at them all, but know it had have a special reason. The first time it was to know a little bit more of the disease SMA, because I know a boy who has SMA typeI. Know I want to read the stories of parents who lost their kids because of this horrible disease. Because I just lost my little body who had SMA and I just can leave with it because he never will celebrate new year or Christmas or even his birthday and I find that terrible. I just hate it when such a little children lose their lives at this terrible disease.

now I can say it to some one because no one of my friends have ever heard of SMA and they just don't understand it. I wish every one a happy Christmas and a happy new year and every one a lot of strength and courage annelies -X-

Name:

Alicia McKulla

Email:

alimck@optonline.net

Date:

27 Dec 2001

Time:

08:07:37

Comments

Some one very dear to me has just given birth to a beautiful baby boy who has been diagnosed with SMA. It's very comforting to read these stories and know that she will have a strong and unbreakable tie with so many strong people.

Name:

Shad & Leota Johnson

Email:

shad@intercorp.com

Date:

01 Jan 2002

Time:

14:57:17

Comments

We are the Uncle & Aunt of Devon and Sidney Stants. and they truly are heroes as well as their Parents Steve & Laura. Although we did not get the privilege of enjoying them here on earth. I know they are with Jesus in Heaven and are as Happy and Healthy as any child could ever possibly be. and We will be there to enjoy them someday. With all our Love to Steve, Laura, Devon, Sidney,& Kaylee Stants. Uncle Shad & Aunt Leota

Name:

sarah bacon

Email:

sarah_jaynne@hotmail.com

Date:

22 Jan 2002

Time:

06:34:28

Comments

hi im sarah, my daughter charley died 1st 1998 with sma type1 she was 7 mths old.i miss her more and more each day. i have 2 healthy children both older than charley. i so much want another child but am having trouble conceiving and my gynocolgyst wont send me for test because of the risks of sma. if any one else has encountered problems like this email me to say how you bot around it. ive taken tablets for my ovilation but to no joy the nxt step would be ivf. is there any one else around from the uk i could get in touch with as i just love to talk about charley till im blue in the face.. thanks for taking the time to read this love sarahxx charleys mum

Name:

Patty Kloster, Cole Fiedler's Godmom

Email:

pmtdklos@northpro.net

Date:

06 Feb 2002

Time:

21:54:12

Comments

Hi. Cole had surgery this morning to put 2 rods in his back. I talked to his dad, Rick, this afternoon and he did fine. He most likely would sleep most of the day and night and then they would try to get him sitting up a bit in his chair. I am so proud to be Cole's godmother. His life has shown me what is most precious in this world. Please continue to pray for him for a full and FAST recovery. Thanks!

Name:

Jackie Christianson

Email:

dcn5js@msn.com

Date:

12 Feb 2002

Time:

12:51:49

Comments

I had a brother that died in 1969 of Werdnig Hoffman's. He was 20 months old. It is wonderful to hear that the medical profession has come so far on this horrible disease. He spent the last 3 months of his life in the hospital and then at Sunnyland. That was the only option available at the time because of his need for total care. There are so many more options out there today. I only wish I could go back in time with my mom and bring him here. My prayers are with all of you and your little angels. Our little angel is in heaven and I can only hope he is looking down on all of your angels saying "hang in there because a cure is coming".

Name: Ruby
Email: jtriple2@mac.com
Date: 22 Feb 2002
Time: 12:03:31 AM -0500

Comments

Thank you for trying to raise awareness about SMA...your SMA angel Matthew is my nephew.

Name: Keri Bry
Email: jbryfam@msn.com
Date: March 06, 2002
Time: 10:18 PM

Comments

I am signing this in the memory of my Angel....Kyle Raymond. He passed away February 15th, 2002(he was only 14 1/2 weeks old). He had Werdnig-Hoffmans(SMA, Type 1). He was the most incredible little man(human being for that matter) I could ever wish to know. He brought so much love and laughter into our lives everyday at such a young age, it was amazing. We wanted fifty more just like him. My husband and I had never even heard of this disease until our son was diagnosed with it one week before his death. What an unfair way to start life, never having a chance. But yet, Kyle fought like a courageous little soldier to the very end. He will always be our little man and the love of our lives.

Name: Jodi
Email: Dereka@ecr.net
Date: March 07, 2002
Time: 10:34 AM

Comments

This is a very cool website. Our son died of sma. I miss him so much. I miss his smile, holding him and the feedings, diaper changes. He's not with me he is with Jesus. I was holding him when he passed away. It has helped me with lots of info. Thank you SMA angels

Name: Zon
Email: diggers@wosib.org
Date: March 07, 2002
Time: 01:08 PM

Comments

Greetings!"http://www.wosib.org"> You are cordially invited to join Women Of Strength & Inner Beauty! We are an online organization for women of all kinds, to come together, to live, laugh and learn. I think you and your lovely site would be a wonderful addition! We'd love for you to join us! If you're not interested in our membership, be sure to check out our awards program, free graphic sets and much more!

Name: Mindy Myers
Email: larry877@webtv.net
Date: March 07, 2002
Time: 10:19 PM

Comments

I am the Mother of Keri Bry(jbryfam@msn.com).We lost our grandson to SMA 1 on February 15,2002.He was the joy and love of our lives.His grandfather and I helped care for him in the last month of his life.We were truely blessed to have been able to spend three 1/2 months with a true gift from GOD.He was truly an angel from above.We miss him so much and the pain of our loss is so unbearable.Your website is wonderful,it really helps to bring families who have been thru this tragedy closer together. WE LOVED OUR GRANDSON KYLE RAYMOND BRY. Sincerely,Mindy Myers

Name: Kande Dixon
Email: kkd321@aol.com
Date: March 12, 2002
Time: 01:46 PM

Comments

My boyfriend's niece, Ashley, is suffering from SMA, she is 2 years old. He just came from visiting her, and says that she is growing weaker everyday. Please pray for a cure, and for Ashley. Our hearts are breaking...

Name: stella
Email: drsduke85@yahoo.com
Date: March 12, 2002
Time: 11:54 PM

Comments

YOUR SITE IS GREAT.

Name: jennifer
Email: mart109q@aol.com
Date: March 19, 2002
Time: 10:09 PM

Comments

very sad to lose children at a young age. this makes it very hard to handle. i have lost a niece to sids @ 2 1/2 months old. that was very hard. god bless you all...

Name: Becky Newsome
Email: baloogee@hotmail.com
Date: March 21, 2002
Time: 10:41 AM

Comments

I check your site everyday to check on Conner Riggs. May God Bless Each And Every SMA Angel.

Name: Billy Huntley
Email: heysma@alltel.net
Date: March 22, 2002
Time: 08:23 PM

Comments

I just recently found this site due to the good fortune of having someone tell me of it in an e-mail. I've truly enjoyed meeting all the people & reading their stories. SMA effects quite a number of us. You don't realize this until reading of them on great places like SMA angles. I am 42 and was diagnosed with SMA III (Kublegerg-Wellander) when I was 20. To find out my story go to www.heysma.com Billy H.

Name: angel
Email:
Date: March 29, 2002
Time: 04:22 PM

Comments

Name: Mary Gregory
Email: mog4U@netzero.net
Date: April 06, 2002
Time: 01:52 PM

Comments

Iwas not aware of this horrific killer. Please make it go away. I'll be thinking and praying for you, little buddies.

Name: Angel
Email: Angelings@neo.rr.com
Date: April 08, 2002
Time: 05:19 PM

Comments

Name: PAT JONES
Email: jonespat@inova.com
Date: April 09, 2002
Time: 10:47 AM

Comments

This is very informative and a wonderful tribute to these children

Name: Rita
Email: poetrita@msn.com
Date: April 11, 2002
Time: 12:35 AM

Comments

Thanks for sharing--it will be invaluable for me to read what worked parents who went through this disease with their children as I care for my first SMA case as a hospice nurse.

Name: karen&ernie
Email:
Date: April 12, 2002
Time: 05:48 PM

Comments

Name: Corinne Shuh
Email: gcshuh@golden.net
Date: April 14, 2002
Time: 11:35 PM

Comments

Until today I had never even heard of Werdnig-Hoffman disease. But today I learned that friends of ours son was diagnosed with this tragic illness. Thank you to the many individuals who have shared their stories and their pain on this web site. Thank you to the health professionals who work with these little angels and their families - God Bless You!

Name: Sonja Hamilton
Email: pignut52@yahoo.com
Date: April 16, 2002
Time: 02:18 PM

Comments

I think it's a really good thing to be able to sign a guest book.

Name: Ramona Miller
Email: ramona@frontiernet.ent
Date: April 20, 2002
Time: 07:36 AM

Comments

John and Betsy, so sorry to hear of the passing of your precious gift, Conner. Know that my prayers are with you doing this time and that God will give strength to continue to face each tomorrow. May God richly bless you for your faithfulness in serving and taking care of His gift to you.

Name: Pamela Pittman
Email: ivyfooted@yahoo.com
Date: April 20, 2002
Time: 10:09 PM

Comments

Conner Riggs's mother is a friend of mine and with his passing I have had numerous thoughts of the trials and tribulations that he and his family have dealt with. I am please that there is a source for them to be able to share their life with and a place to always be able to find support. Through my work I have seen far to many children hurt and too many children that are killed at the hands of others. It is always sad to see a child die for whatever the cause but it is especially sad today when I think of Conner and his devoted mother, Betsey. Betsey & John you are in my prayers.

Name: Alexis Joiner
Email:
Date: April 21, 2002
Time: 07:39 PM

Comments

I just want to say that thank you for having this web site and for letting the people ignorant of this disease find out more about it and may God bless and look after his children who are suffering because they are truly angels and may god bless

Name: Daniel Mullins Family
Email: dmathome@aol.com
Date: April 24, 2002
Time: 03:46 PM

Comments

You bring to attention a very serious desease which effects many children and even more healthy people. God bless you one and all. Mullins Family

Name: tina carrier
Email: grampy@mlgc.com
Date: April 29, 2002
Time: 12:03 PM

Comments

Hi, I'm a friend of the O'neill family,Casey,Colin,Sue&Gene from VT. I miss them all terribly. I think your web site is terrific.

Name: Karin Bunnell
Email: buns2222@aol.com
Date: April 29, 2002
Time: 08:57 PM

Comments

As Director of Wish Programs in North Carolina for Make-A-Wish, a friend knew I would be interested in reading your web-site. Truly, truly they ARE Angels afflicted with physical weakness, but with such enormous heartfelt strength. Your web-site is beautiful with such compassion yet information. Blessings, Karin