Read Our Guestbook

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

Name: Heidi Harper
Email: Heidi_Ho24@Hotmail.com
Date: May 05, 2002
Time: 07:21 PM

Comments

this is an excellent page for people to learn facts about sma patients well done keep up the good work.

Name: William B. Glover
Email: wbglover@netzero.net
Date: May 08, 2002
Time: 09:37 PM

Comments

Just visiting. I was a friend of the Connor Riggs family.

Name: RUTHIE
Email: RUTHLESS006@YAHOO.COM
Date: May 15, 2002
Time: 12:46 PM

Comments

WONDERFUL WEBSITE, GREAT JOB!!! MY BEAUTIFUL SON KAELAN IS 4 MONTHS OLD AND MAY HAVE SMA TYPE 1 AKA WERDNIG-HOFFMAN. DIAGNOSIS IS NOT FINAL, BUT INFORMATION OUT THERE LIKE THIS HELPS SUPPORT AND EDUCATE EVERYONE. OTHER HELPFUL AND WONDERFUL WEBSITES ARE WWW.FSMA.ORG & WWW.MDAUSA.ORG. PRAYERS ARE WITH YOU ALL AND SOON THERE WILL BE A CURE. KEEP HOPE & FAITH AND MIRICLES WILL HAPPEN. GODBLESS ALWAYS.

Name: Karen Chene
Email: Kacali@aol.com
Date: May 15, 2002
Time: 10:49 PM

Comments

HI, I'm one of Payton's nurses Glad there's a website like this.

Name: Christiana Gallichon
Email: chris.g@globetrotter.net
Date: May 22, 2002
Time: 11:12 AM

Comments

Our sma Angels website has touched my heart in so many ways.  I've cried so much going through the stories that are on here.  I have 4 sons and it makes you want to hold on tight to them and thank God each day .I've been blessed and it takes reading all those stories to really make you thankful for all I have. Thank you for sharing your precious memories and making more people to see the light in how precious life and family is.  THANK YOU ALL

Name: Colleen Anderson
Email: don't have
Date: May 23, 2002
Time: 01:58 PM

Comments

My nephew died Monday May 20 2002. I just wanted to say that this is a heart breaking disease. My Sister and Brother -in- law, Heather and Michael Doyle, were so wonderful and loving to him. His sister hannah and Natalie were also terrific. My heart aches for anyone who's child has this. God Bless

Name: Eustasia Vaafatu Tunoa
Email: EDPUU@hotmail.com
Date: May 24, 2002
Time: 01:08 PM

Comments

Hi, I would like to thank you for this site, it has comforted me very much. I have two little girls. A four year old who is very healthy and an 8 month old who was diagnosed with SMA today. I found this site while researching SMA on the net, thank you very much.

Name: Levaleai I'u Faleafine
Email: Levaleai.Faleafine@usda.gov

Comments

Hi my name is Levalea'i and this message is for my cousin Deustch and his family. I'm sorry to hear that your daughter is diagnosed with this disease. It's hard to see a precious angel to be diagnose with this. You are in my thoughts and prayers. You have a precious little girl and I pray that our heavenly father will look upon her and give her strength and also the both of you. Take care and may God answer our prayers. love you all.

Name: Ebony Stevens
Email:

Comments

Hi! I am a 17 year old girl with Spinal Muscular Atrophy Type III, also known as Kugelberg-Welander disease. I use a power wheelchair to get around and a tracheotomy tube. I am so moved by all these beautiful angels that I have seen here. Sometimes I get depressed because I cannot walk and have to use a power chair but I realized I am lucky, that some kids don't make it and I believe that these beautiful babies are my guardian angels and all of their parents should be so, so, so proud of these wonderful humans that brought so much light to the earth. Love Ebony

Name: Barry Saranchuk
Email: mbcchuck@epix.net

Comments

Love our SMA Granddaughter. She is an SMA angel, Skylar Saranchuk.

Name: Mary Staberg
Email: mstaberg@theworks.com
Date: June 12, 2002

Comments

Hi, I'm Dillon Stabergs grandmother. Thank you for this site. Its good to be able to come here and let the grief out. And to see the people care.

Name: christy hanson
Email: CHRISTYH@SBTC.NET
Date: June 14, 2002

Comments

Our son Dustin died of Wernig-hoffmans disease 4 years ago and at that time we had never heard of it. I am pleased to know you are making a great effort to help people like myself with this. Thank you, Christy

Name: AubreeSchroeder
Email: Aks9pooh@aol.com
Date: June 22, 2002

Comments

I Hope they have a cure for this because my little cusson named Sara Mackienzie Seavers that has sma and she is onley 2. So i hope they have a cure for sma because we worked with her and when she was 8 mounths old she could stand up and now she cant. She is a mart gril and i whant her to stay like that and stay in our prayers.

Name: Kristy Henry
Email: Khenry76@excite.com
Date: June 29, 2002

Comments

This is a wonderful website. I have a 5 1/2 month old nephew with SMA Type 1 and find your stories informative as well as inspirational. We just need to take as much time as possible and spend it with our angels. Thank-you for sharing, Kristy Henry aunt to Kaelan Bradlee (pronounced collin)

Name: Jennifer Eastham
Email: EasthamJennifer@hotmail.com
Date: July 01, 2002

Comments

Hello crystal I just wanted to say hi I am courtney canfields mom you played babies with her at the confrence in chicgo and I just wanted to let you know that she ask's and talk's about you all the time if you ever want to call us our # is 903-527-3341 hope to here from you and you can always email us. thanks jennifer eastham

Name: Laurie Edwards
Email: dalje@msn.com
Date: July 01, 2002

Comments

My 2 grandsons both have sma type 2.

Name: YVONNE FILER
Email: mybaby1955@hotmail.com
Date: July 02, 2002

Comments

HI I just wanted to tell all the moms and dads and speicaly the little angels out there that my prayers are with you. I had a little neice that died from the same thing and she never knew what was wrong her mom took care of her all by her self and she did a good job. So my heart goes out to all of you and wish you the best.

Name: linda frazee
Email: frazeelinda@hotmail.com
Date: July 03, 2002

Comments

what a wonderful website! if only i could have found support like this when we had our two babies with wernig hoffman. our first, heather was born in 1973, and went to be with the lord when she was almost 3months old. then in 1980 our son, jacob was born with it and left for heaven when he was 5 months old. the statistics sure have changed alot since then. i'm thankful for the three healthy children that we do have, and the 6 healthy grandchildren that we have. the disease did show up again in the family on my husband's mothers side. his cousin had a daughter with it. it was good to be able to help her and give her information. something that wasn't availabel to me in the 70's. i pray that i never have to deal with this in our family again. it's a terrible way to lose your baby. i pray for all who are going thru this difficult time in their lives. it never leaves you, and the saddness can be too much at times. i think i will always have a broken heart. blessings, linda frazee

Name: Jeanne McGinnis,RN
Email: pandk@brightok.net
Date: July 07, 2002

Comments

I am caregiver to Kelby, an 8 month old baby boy who is so beautiful that it breaks your heart. I am so overwhelmed by the responses to my questions on the sma website from all the parents who are coping with this dreadful disease. God bless you all and may He give each child the strength to fight this killer.

Name: Grace Tunoa
Email: psisami@aol.com
Date: July 12, 2002

Comments

I have never heard of SMA and I'm totally shock that one of my niece has SMA.My prayers goes out to all of the Sma angels and their families.Keep all of your heads up and always know that our Heavenly Father loves each and everyone of us.

Name: Kristy Henry
Email: khenry76@excite.com
Date: July 12, 2002

Comments

This is a wonderful web site I visit quite frequently so that I can learn as much as possible to help my nephew Kaelan Henry in his fight with SMA and have met the most wonderful people whom have helped my family with their knowledge of this horrible disease and wanted to say THANK-YOU WANDA, JIM AND SAMANTHA DODARO! My nephew had a serious scare with pnemonia, but is a fighter and is getting better everyday so please when you are praying for your angels say a prayer for ours as well. Thank-you Kaelan's Auntie Kristy

Name: Grace Wright
Email: gracy41@aol.com
Date: July 13, 2002

Comments

Visited your site many times and an touched each time. My granddaughter, age 5 has SMA, type 1-2. She has been through many trying times and faces many more. She is truly an angel and God has given her the strength to fight. She just received her powered wheel chair and is mastering it well. Her name is Bonalyn Carver and she lives in Albuquerque NM. Bonnie has a peg tube and uses a vent. This site has been a great source of information. Thank you and God bless all the families who are affected with this disease.

Name: Cindy Henry
Email: cchhenry@aol.com
Date: July 18, 2002

Comments

This truly is a wonderful website! My beautiful 6 month old grandson, Kaelan Bradlee Henry has SMA Type 1. I want to thank everyone who spends so much of their time to help educate us and fight for a cure for this horrible disease. Especially all the parents who give of their time so willingly when I know they are already overwhelmed with caring for their own child. A special thanks to Wanda & Jim Dodaro who have been a wealth of information and support. God Bless all our angels and their families!

Name: Gloria Tunoa
Email: gtunoa@yahoo.com
Date: July 18, 2002

Comments

God is Able...He is Our Divine Healer too...nothing is impossible to Him.When my sister in Germany email me about her baby's condition,i just encouraged her to pray because it really helps give us that peace of mind.What a healing Jesus,i 've found in You,what a healing Jesus...to restore,refresh and renew..what a healing Jesus in such a time of this arise on healing wings,you're the Son of Righteouness....Prayer changes things....i know the world might say that there is no cure but God is a Big God and he can preform miracles...I just wanted to continue to pray for my niece "Eustasia Alanis Gertrud Pu'u"out there is Vilseck,Germany....not only that all of the "SMA Angels" out there too.Cast your burdens unto Jesus,he cares for you.....The Lord is my light,and my salvation,whom shall I fear alone........my prayers are with you and your families.......until then.......May God Bless you...........Love Always,gtunoa

Name: Kristy Henry
Email: khenry76@excite.com
Date: July 19, 2002

Comments

Thank-you for this web site I have been reading about all of the precious children that have been affected with SMA a horrible disease and I have learned so much. I have a 6 month old nephew that also has SMA Type 1 and you have truly helped me to understand the road that our family has ahead of us. I am fortunate to have found this web site and have met some wonderful people through reading about this extaordinary and courageous children. I feel that every story deserves to be read and I am spending a lot of time to get to know these angels. May GOD BLESS you all and your families.

Name: Rich Clingman
Email: Rich@DoctorBach.com
Date: July 19, 2002

Comments

I've just added the feature story from the latest issue of the UMDNJ HealthState magazine--A Matter of Life and Breath--Dr. John Bach "Inspires" Patients To Surive and Thrive. Along with discussions about NIV, the article features the story of 8yo Nicky Piazza (SMA-1) and his family; how NIV reduced his hospitalizations and intubations from 10 in his first 4 years of life to ZERO in the past 4-1/2 years! To read the story, go to www.DoctorBach.com . Rich Clingman, Webmaster, www.DoctorBach.com

Name: Lisa Brown
Email: We3HOPE@aol.com
Date: July 21, 2002

Comments

I'm sorry to hear of your losses, yet I'm glad that I found your site. I am working with a group towards a National Day of Remembrance for Pregnancy and Infant Loss. I would like to add your site to our Resources page and offer our support to you as well. Peace be with you. www.pregnancyandinfantloss.com

Name: Ken Spiegel
Email: sarg_spieg@ejourney.com
Date: July 21, 2002

Comments

Little Billy you Mom and Dad are in my thoughts. many people are pulling for you, i know its all up hill but love never gives up.

Name: Shon DeAmbrose
Email: Dpepelapew@aol.com
Date: July 21, 2002

Comments

This is a great website, I have heard of similar afflictions prior to this, but was unfamiliar with this one until recently. Like many people I cannot understand why, what possible reason exists for children to suffer in such a way. They are truly as you have named them our angels. I am one of billy spiegel's relatives. The fact that these children can endure this and still smile is amazing. I feel small compared to their strength, it is a spirit and courage that I surrender to. Please keep searching for a way to end this.

Name: joan brooks
Email: jobr@qix.net
Date: July 21, 2002

Comments

Hi i'm a friend of Ken Spiegle , and my prays are with all the children.

Name: Jan Chatland
Email: comlabjan@hotmail.com
Date: July 21, 2002

Comments

Yes, I have been made aware of this terrible illness by a grandmother of one of its victims. It is a beautiful site.

Name: Daniel Rosa Martins
Email: danielrm2@bol.com.br
Date: July 22, 2002

Comments

Olá, estou conhecendo agora este site. e acho que ele vai me ajudar. Pois sou pai de duas crianças com atrofia miscular espinhal Saudaçoes a todos. Caso tenham alguma informação que me ajude a melhorar a vida de meus filhos . me enviem e-mail : danielrm2@bol.com.br. Obrigado. Daniel

Name: Elizabeth Fogg-Ababon
Email: elizabeth@parentingbyparents.com
Date: July 23, 2002

Comments

Hi! I love your site. I have 1 brother with SMA type II. I just lost my youngest brother that also had SMA, however it was due to a car accident, not even related to the SMA. He was 21 years old and doing everything he wanted to with his life. He was one of only 40 students in the dramatic writing program at New York University. We found out the day of his funeral he was one of 2 final candidates for an Emmy internship that was all he could think about. I will be adding a link to my resources section on my website: http://parentingbyparents.com

Name: Diane
Email: Korocc@hotmail.com
Date: July 23, 2002

Comments

This is a very special site and it is well thought of and taken care of. May God bless all these here and those who take the time to run this site. It also gives family and friends a chance to realize they are not alone with this and its effects on their loved one who is dealing with sma.

Name: Adelyn Pu'u-Warren
Email: a777lei@aol.com
Date: July 29, 2002

Comments

This is such a BEAUTIFUL website. I, like so many others were unaware of this terrible life threatening disease until a family memember was diagnosed. It's also very disheartening to see that there is no cure. I want to send my prayers out to my dear cousin Deutsch and his beautiful family out there in Germany. Be strong little brother, as we are here for you here in California and back home. May God spare all the precious SMA Angels out there with hope and confidence for miracles to happen! Alofa mo oe ma le fanau....

Name: Maninoa Wesley
Email: www@.comshaftmatua
Date: August 03, 2002

Comments

I just want to let you know that your web means alot to my me do to the fact that if i had not enter it I would have never know what this sickness can do. I will pray for the children all over the world whom have this sickness including thea parents. God Bless you all.

Name: Maninoa Wesley
Email: shaftmatua@aol.com
Date: August 03, 2002

Comments

I have heard of this Disease,but never thought it is this serious.My heart and Prayers goes out to the Parents whom there Angels have this Disease and the Angels there Self.I'm shock to find out that one of my niece have this Diease.Daysha,Pu'u be strong in the Lord.My love to you both and my niece's.SMA Web Thank You Very Very Much. God Bless You All. Maninoa Wesley Maninoa Numera Wesley

Name: Siona Sister's
Email: shaftmatua@aol.com
Date: August 03, 2002

Comments

We the Siona Sister's would like to Thank's the SMA Web for this Website. THANK YOU. To our sister Daysha and brother in law Pu'u. Our Prayer's are with you always, Be strong in the LORD, He will guide you through. Our LOVE to our niece's, Lenei and little Daysha.We love and miss you and family very much. Love always. Your sister's Mani,Laai,Lima,Fini,Nei,Jody,Lote.

Name: Siona Sister's
Email: shaftmatua@aol.com
Date: August 03, 2002

Comments

We the Siona Sister's would like to Thank's the SMA Web for this Website. THANK YOU. To our sister Daysha and brother in law Pu'u. Our Prayer's are with you always, Be strong in the LORD, He will guide you through. Our LOVE to our niece's, Lenei and little Daysha.We love and miss you and family very much. Love always. Your sister's Mani,Laai,Lima,Fini,Nei,Jody,Lote.

Name: Catherine
Email: helcatmac@smypatico.ca
Date: August 07, 2002

Comments

This is a fantastic Website. Please let whoever designed it know that I think it is the best I have seen. You can feel the love for the children coming right through the screen! My best wishes for everyone here.

Name: Pamela Smith
Email: pamelaleysm@hotmail.com
Date: August 12, 2002

Comments

Love and need this site. My grandson Bradley Shane Smith was diagnosed with SMA Type 1, 2 weeks ago. The out pouring of love and concern from other SMA families has amazed us. I thank God for the people we're coming to know as an extended family, and for the blessing of our own little angel. He is truely a gift from God.

Name: Deutsch Nuuelua Puu
Email: DPUU@Hotmail.com
Date: August 12, 2002

Comments

Hi Laura, I just wanted to take this oppurtunity to thank you for such a beautiful site, and thank you for remembering and Honoring the SMA'ers and Families of those with SMA, and Especially those Angels who have received the Call of our Lord and Savior. Be it Known that Regardless if you Have an SMA'er, or you were a Father, Mother, Relative, and or a Friend of an SMA Angel, You have then you have been Blessed with that Angel. I am a father of a soon to be 1 year old baby girl SMA'er, and I believe that no matter where her future may lead, I will be on the winning end, for she is now in my arms, and when and if the Lord calls on my Angel, then I will be a Winner for I know that She is in his Magnificent Arms. Thank you everybody, And God Bless those who wrote on behalf of my Daughter Eustasia Alanis Puu, and especially to my family, and my Siona Sisters, You have all Inspired me to live a happy life with my Angel, and I will continue to enjoy these precious moments with her and the rest of my Family..... "IN HIM".

Name: jennifer greenia
Email: jag67@att.net
Date: August 14, 2002

Comments

thank you for helping gat max web page

Name: Betty Swinsick
Email: MsBetty447@aol.com
Date: August 15, 2002

Comments

This is a wonderful, beautiful site. Thanks for sharing with us. It makes those of us who have children/grandchildren realize that "things" can happen to all of us. Our grandson Ryan Swinsick has Williams Syndrome. He was two years old this last May. He still doesn't walk or talk. He is beginning to stand up now for a few seconds, and can repeat a word sometimes. He is a beautiful, happy child, and we love him dearly. (this is another chromosone problem. His 7th chromosone has a tiny bit missing. God bless you each and every one. We will keep you all in our prayers, and we know that even though their bodies aren't perfect in this world - in Heaven the will be perfect!!

Name: Gloria Afulu Siona
Email: Loliciona@hotmail.com
Date: August 17, 2002

Comments

First and foremost I would like to send my love to all the SMA angels out there.... This disease has put these children in so much pain, and has even caused some of them their lives.. But with God by their side, ANYTHING and EVERYTHING is possible.... My heart goes out to the families of these special angels. Just have faith in God and everything will be alright.....Never Give Up!!!!.... To my dearest cousin Eustasia and her Husband Deutch, I'm sorry that baby Alanis was diagnosed with this disease.. I just pray that God watches over her, and blesses her with good health... You will always be in our prayers.... God bless!!!....Much alofa to you all!!! Gloria Afulu Siona

Name: Anne Tidwell
Email: derrilanne@cs.com
Date: August 20, 2002

Comments

Thank you for sharing your precious little ones with us....they will always be in our prayers...Anne and Derril

Name: Amy Lake
Email: cookjhn@aol.com
Date: August 25, 2002

Comments

My daughter,Madelyn, has SMA type 1. She is a beautiful child! It is hard watching my little one fight this horrible disease. Your website is great.

Name: Brandy Hatfield
Email: tcooke@stargate.nat
Date: August 26, 2002

Comments

hi i hve a little angel to his name is tahj. i think this site is great. thanks gina we just have to keep praying and be positive

Name: Stephanie Nellis
Email: Angelique070776@aol.com
Date: September 04, 2002

Comments

These pages are so full of life just like all of our Angels!!!!! You all hold a special place in my heart.My daughter has SMA type 2 and she is 4 going on 24. Stephanie

Name: Amy Lake
Email: cookjhn369@aol.com
Date: September 14, 2002

Comments

I have spent many hours on this web site reading about each child and every story. On Sept.13, 2002 at 1:05 PM my little angel took her last breath and went to heaven. She was 8 months and 9 days. We renamed SMA. For us, it stands for Someone Mighty Awesome. One of these days when I find the strength and courage I will tell Miss Madelyn's story for her.

Name: Tracey
Email: tsdca1@aol.com
Date: September 21, 2002

Comments

I have my own little angel Alexandra who has sma 1. She is still with us, and we cherish every moment that we have with her. I think your web site is wonderful.

Name: julie mcmillan
Email: julie.mcmillan@xtra.co.nz
Date: September 25, 2002

Comments

we have just been told our son cody has sma2, thank-you for allowing us to read your site for more information on this diagnosis.

Name: Charlotte Joiner
Email:
Date: September 27, 2002

Comments

I was just visiting the site. I heard about if from a mutual friend of the logan Martin family. Logan was a precious little boy and loved very much. He is a beautiful little angel now residing with God. God be with his family and all the other families affected by this terrible disease.

Name: Tanya McINtyre
Email: usmcmac2002@aol.com
Date: September 28, 2002

Comments

My daughter has Hydrocephalus and 80 surgeries to date. I came her because Andrews Toy Box donated toys to her. I thanks you so much for making her smile. It is what she needed and we needed!

Name: Jeanne McGinnis, RN
Email: pandk@brightok.net
Date: October 01, 2002

Comments

The website is beautiful. I am caregiver to Kelby P. Dueck, 9 months old. Kelby passed away on 09-29-02 at his home in Boley, OK, at 6:50pm (CDT). He was a beautiful little boy with such a pleasant personality. I respectfully request your prayers for Kelby's family. Your organization, SMA Angels and individual families with children with SMA has been invaluable for information that has made such a difference in Kelby's quality of life. God bless you all and thank you. Jeanne McGinnis, RN.

Name: Denise Quartararo
Email: darlin47@optonline.net
Date: October 12, 2002

Comments

Just surfing around I came across your website. Great. My Blessing go out to you.

Name: melissa garcia
Email: mt946
Date: October 12, 2002

Comments

Hello my name is melissa garcia Iam 23 years old I always wanted to have a baby I thought I couldn't because so many years trying I wouldn't come out pregnant finally in may of 2001 I found out I was pregnant I was so happy I was so excited every thing went good with the pregnancy. I had my little girl January 16 2002 I called her my miracle baby on the 19 we came home I thought she was perfect but I notice my daughter had a very weak cry and that she wasn't moving so I took her to her doctor they kept telling me she was just lazy I wish that were true on may 18 02 they told me she had S.M.A I didn't know what it was the doctor explained it I wanted to die I ask the doctor if I can give her my spine or if I can give her my strength the doctor said no that there is nothing to cure S.M.A my little girl is now 9 months her name is Tatiana ashley garcia she's been threw so much from ventilators to bipaps and now a Gtube it's very hard I thank you this site has been very helpful now all I wait for is a miracle I call her my angel with broken wings.

Name: Lesli DeSimone
Email: joenles@earthlink.net
Date: October 16, 2002

Comments

Wonderful, beautiful site I visit when I miss Rebecca the most and want to know that other people suffer as I do. Not wanting to sound cruel, but sometimes comfort can only come from those with shared experiences.

Name: Diane
Email: mard39@earthlink.net
Date: October 24, 2002

Comments

I was given this website by one of the facilitor's of a class I was attending in order to become a memeber of IRC United Methodist Church, Titusville, FL. Her son has SMA and she is designing a website for Christian. Angel's truley describe these children I see in the pictures, what beauty. I will light a candle on December 8, 2002 for all those who have found their place in heaven, and for those still with us. Wonderful site, and thank you for sharing your SMA angel's and their families.

Name: Allen Anderson
Email: angelanimals@angelanimals.net
Date: October 28, 2002

Comments

Hi, Enjoyed my visit to your website. Thank you! If you have a moment visit us at the Angel Animals Network, an organization dedicated to increasing love and respect for all life one story at a time. [www.angelanimals.net] You may have an angel animal story to share in our new book, weekly Day Brightener newsletter, public workshops, or media interviews. Again thanks. --Allen

Name: Cauleen
Email: nydadpig@yahoo.com
Date: November 04, 2002

Comments

Beautiful site

Name: joshua
Email:
Date: November 08, 2002

Comments

I like your site it has a lot of information , it is sad that many children live to suffer from this disease.

Name: Daniela Lynsdale
Email: peppek1412@aol.com
Date: November 12, 2002

Comments

Hello everyone.I really love your webside,but it always makes me really sad,too.I lost my little boy Samuel in June 2000 to the desease.We all miss him terribly.We still have got his twinsidter Sofia,which is affected too,and when I look in her face I see my little Samuel.I know he is always with us,looking after us all,but it hurts so much tsht we can't hold and cuddle him anymore.I am not looking forward to December,because it is their Birthday on the 14th,and Christmas.We always celebrate the Birthday,and I always backe two cakes,One for Sofia and one for Sam.I talk to him every day.Sofia will be three years old now.We are so happy taht we still got her.She is a lovely little girl,smiling all day.My thoughst are going out to all the parents who lost a child.Our sma angels are always with us,and they have lost of friends to play with in heaven.God Bless you all.

Name: DAYNA KOEHLER-BLANKS
Email: NAYDAY1973@AOL.COM
Date: November 13, 2002

Comments

MY COUSINS SON BRETT IS A BEAUTIFUL BLESSING DESPITE HIS CONDITION. VERY TALKATIVE AND FULL OF LIFE!!

Name: Sosefina Sivanu-Holi
Email: motuofiafiaga00102@hotmail.com
Date: November 20, 2002

Comments

My cousin Eustasia emailed me a few months ago about this site. When I first entered, I thought I was in Heaven because there were angels everywhere I look. Stasia and Deutsche, just remember we're praying for you and your beautiful little angel Alanis and baby Lenei. I was in the same situation with my mother 3 months ago back home. I waited for a miracle but I guess God really needed a gardener in heaven. I bet she's busy pulling weeds up there. The Lord is with you, don't be afraid. Alanis baby, God is the greatest Doctor, and he's there with you always. We love you!

Name: Wei-Lie Matagiese Tunoa
Email: weilie@hotmail.com
Date: November 22, 2002

Comments

My heart goes out to my first cousin Eustasia & hubby Deutch Puu...i just found out about baby Nisi...i didn't realize how serious it was until i saw this SMA site...! She is so beautiful! Believe in the power of PRAYER...miracles do happen! The TUNOAS of Cali/Saipan/Vaitogi will keep you and the family in our prayers today and always!! We love you BABY NISI!

Name: Nua Pola - Rose
Email: nusheer@attbi.com
Date: November 24, 2002

Comments

A good friend of mine in high school, better yet a cousin down the blood line..has an angel named "Eustasia Alanis Gertrud Pu'u" (daughter of Eustasia & Deutsch Pu'u.) I pray that Alanis is blessed with the strength to overcome this disease. I'm so sorry that ur angel has this disease, as well as all the children who have this. Alanis you will be in my prayers, and ur parents & sister. May your heart be filled with joy & happiness. With love --- Nua

Name: Msthang
Email:
Date: November 26, 2002

Comments

I'll have your niece Eustasia Alanis Gertrud Pu'u in my prayers. May God show mercy and Bless our Angels with a MIRACLE. My heart goes out to all the families of our Angels. Much alofa <Lina>

Name: PAMELA WILSON
Email: PWILSO1@AMFAM.COM
Date: November 29, 2002

Comments

I LOVE THIS SITE. MY GRANDDAUGHTER IS MALIA SIMONE GEORGE. SHE HAS HER WEBSITE HERE. THIS HAS BEEN A BLESSING FOR ME AND MY DAUGHTER AND SON IN LAW. THERE ARE MANY, MANY PEOPLE WHO HAVE LEFT THERE KIND WORDS AND EXPRESSIONS OF LOVE FOR ALL FAMILIES THIS TERRIBLE ILLNESS HAS AFFECTED. I JUST WANT TO SAY THANKS TO ALL WHO HAVE HELPED DEVELOP THIS WEBSITE. I TALK TO MY LITTLE ANGLE, MALIA, HERE. I ENJOY READING THE COMMENTS FROM ALL WHO VISIT THE WEB PAGE FOR ALL THE BABIES. THANK YOU FROM MY HEART FOR MAKING THIS POSSIBLE. ONE DAY, SOON I HOPE, THEY WILL FIND A CURE FOR THIS AWFUL ILLNESS. PAM WILSON GRANDMOTHER TO ANGEL MALIA SIMONE GEORGE PLEASE ENJOY HER WEB PAGE AS MUCH AS I DO.

Name: Jason Smith
Email: 8654@prodigy.net
Date: December 06, 2002

Comments

Father to Bryan SAWYER Smith (SMA Type I). My wife and I visited this site when Sawyer was first diagnosed as part of our desperate struggle to find out what we were all facing. Amidst the horror, we found great comfort in seeing the angels pictures and reading the amazing stories. Sawyer passed away September 19, 2002 and this site provides us with a great view of the children that our son is playing with in heaven free from SMA. Thank you for all you do.

Name: Crystal
Email: Hondeep80@icqmail.com
Date: December 23, 2002

Comments

Hello, My son Devin was diagnosed with SMA 11-21-02. He was 3 months old at the time, now 1 month and 2 days later, I have all you mothers out there to thank for helping me find the strength to go on and to make my little man's life as long as possible. Thank you all so much! I hope to be adding Devin's page to this beautiful site soon. To me not only are the children precious angels but the mothers and families of these children have been my gardian angels helping guide me in the right direction for the treatment of my son. Thank you all again so much!

Name: Zina Miller Finn
Email: zmfinn@yahoo.com
Date: January 13, 2003

Comments

I am Kalie Miller's half-sister. She has SMA. This site is one of the best I've seen.

Name: Stacy Roberts
Email: krob7777@aol.com
Date: January 17, 2003

Comments

Hi, My name is Stacy Roberts and I live in Hudson, NH. My son Alec lost his battle with SMA last December 30, 2001. I am so thankful for this website! It is such a beautiful way for people to remember our SMA children. I still have a hard time visiting Alec's website because there is still so much pain there. We miss him terribly, especially his big sister April. I can't believe it's been over a year now since I held Alec in my arms and touched his soft cheeks. I can't even begin to tell how much I want him here with me!!! Unless you have experienced a loss of a child....you'll never know. I know Alec is watching over us and taking good care of us. We miss you little Poop, I know we will be together again someday! Love forever and always, Mama (kiss kiss!!)

Name: Kelly
Email: Kelly@angelsforhope.com
Date: January 26, 2003

Comments

What an informative site you have, and would love to exchange links with you. Please let me know if your interested ok? I have learned so much about this horrible disease. Thank you for sharing this information. http://www.angelsforhope.com

Name: Jennifer Eastham
Email: easthamjennifer@hotmail.com
Date: January 26, 2003

Comments

Hello everyone just wanted to say hello to you all some of you no me but some I am sure you don't I am courtney canfiels mother and just wanted to ask for prayers this week for her she has kidney surgery on thursday the 30th and will be at childrens medical center of dallas all emails and prayers are greatly appreciated.

Name: Imani Richardson
Email: imani_richardson@yahoo.com
Date: January 29, 2003

Comments

I love the website. It is nice to know that there are so many other families going through what I am. I lost my son Ronne Wilson in December. He was 7 1/2 mos. old. My prayers are with you all.

Name: jennifer eastham
Email: easthamjennifer@hotmail.com
Date: January 29, 2003

Comments

well everyone just wanted to let you all know that courtney canfield type 2 is having her surgery tomorrow at childrens its for her kidney reflux I know it has nothing to do with sma but the recovery time does well I will try and keep you all posted god bless and I wish everyone well jennifer

Name: jennifer eastham
Email: easthamjennifer@hotmail.com
Date: February 03, 2003

Comments

HELLO ALL JUST WANTED EVERYONE TO KNOW THAT COURTNEY CANFIELD MADE IT THROUGH HER SURGERY WE ARE AT HOME NOW TRYING TO RECOVER ALTHOUGH SHE IS NOW GETTING MUSCLE CRAMPS IN HER LEFT LEG REALLY BAD TO WEAR SHE IS SCREAMING DUE TO HER WEAKNESS BUT WILL WILL WORK THROUGH IT JUST WANTED TO SAY THANKS TO ALL WHO THOUGHT ABOUT HER AND FOR THE PRAYERS THANKS JENNIFER EASTHAM

Name: Elizabeth Falenski
Email: bethlette2003@yahoo.com
Date: February 04, 2003

Comments

Hi, I am a senior in pasquotanbk county and i am doing a project on this disease and would like more information if possible.

Name: Michelle Bertetto
Email: shelbertetto@charter.net
Date: February 05, 2003

Comments

Hang in there baby Cole! We love you .

Name: angelique
Email: sivanila@yahoo.com
Date: February 11, 2003

Comments

hi when i read this site i cried because i never knew how serious this SMA is I have a niece which is Eustasia's daughter and she is very beautiful and funny and always smiling and only now i realize how hard it is and i like to send my prayers for all the little SMA angels especially to my beautiful niece and pray that GOD one day will heal her and my love goes out to all the parents that has to look at their child everyday and know that there is no cure.... God Bless!

Name: angelique sivanila
Email: sivanila@yahoo.com
Date: February 11, 2003

Comments

HI IT BROUGHT TEARS TO MY EYES WHEN I READ THIS WEBSITE AND BROUGHT A MORE CLEAR VERSION OF WHAT MY NIECE IS GOING THROUGH, I GIVE LOTS OF PROPS TO MY COUSIN STASIA AND DEUSTCH PUU IN WHAT THEIR GOING THROUGH, I KNOW THAT THERE IS NO CURE FOR THIS BUT I PRAY THAT GOD WILL ONE DAY HEAL MY NIECE ALANIS. SHE TRULY IS AN ANGEL, VERY BEAUTIFUL AND FUNNY AND ALWAYS SMILING. HANG IN THERE STASIA AND DEUSTCH AND TO BABY ALANIS KEEP SMILING I LOVE YOU BABY ALANIS AND WILL KEEP YOU IN PRAYER!!! GOD BLESS! LOVE MALO@ANGIE@PUKAH

Name: Connie
Email: Conniew@surfcityla.net
Date: February 13, 2003

Comments

Well I stumbled across this site while surfing the net and I have spent the last three hours on here viewing the beautiful angels that everyone has been blessed with. This site is a true inspiration to me,it has showed me that time with our children can be precious so make the best of it while you can. I will get around to signing everyone's guest book here but while I am trying to do that I just wanted to take the time and say Job well done to all the families! My heart and prayers are with each and everyone of you. To those angels who are still here KEEP FIGHTING, and now you have a new friend who is willing to fight with you. For all of you angels who are in heaven, you have moved on to a better place, continue to look down on your families it is you they get their strength from! May God Bless You All!

Name: Belinda Goodenough
Email: mrsgoodenough@hotmail.com
Date: February 16, 2003

Comments

Hello, my sister had spinal muscular atrophy and just died this week. She was 45 years old and I miss her very much. She was one of my best friends. My heart goes out to all who have lost a loved one from this dreadful disease. Belinda

Name: Stephanie Billcheck
Email: swtnsxy8622@netscape.net
Date: February 24, 2003

Comments

I think what you are doing for the families and children is great!

Name: Tammi Velez
Email: tammiv@adelphia.com
Date: February 27, 2003

Comments

I stumbled across your website by doing a google search for "knight shining armor". I found the photo gallery one of the children from this site. I don't have any particular comment except that I feel touched and wanted to say so.

Name: Lynda
Email: behavin@fgi.net
Date: March 06, 2003

Comments

This is a great site for support, and information. I'm sending love, and prayers to the little ones! (((hugs))) http://theraokgroup.com

Name: Wystful 1
Email: http://www.geocities.com/wystful_1
Date: March 06, 2003

Comments

Hello.....I dropped by to see this awesome site by way of a friend a the RAOK Group. It's truly an awesome thing you're doing. Tho these children's stories will tear your heart apart, it's something needs to be done to educate the public and cause support for ones in need!!

Name: Penny Clark Babson
Email: angelflight@adelphia.net
Date: March 06, 2003

Comments

This is a wonderful site simply wonderful!!!

Name: Irene Blundell
Email: blundell117@bigpond.com
Date: March 08, 2003

Comments

This is the most comfort I have ever had in relieving myself of the anxiety that I contributed to my Son's death.

Name: Elizabeth
Email: bethlette2003@yahoo.com
Date: March 14, 2003

Comments

Hi I am doing a fundraiser for SMA and I need to know where to send the money that I earn from this fundraiser. I need this information as soon as possible. Thankyou

Name: nancy semple
Email: nansempl@aol.com
Date: March 20, 2003

Comments

My daughter Elizabeth lost her battle with SMA in 1977 at the age of as she would have said nearly 14 years. I was really pleased to see this page as I was unaware of anyone else having this disease. She was my first born child and she was a shining star. These children are a revelation as every day is a struggle for them. There is not a day that she is not missed. I was lucky enough to have two other children who are both healthy but I would not change a day which was shared with such a wonderful person.

Name: JanetA.Welch
Email: Thinkwelch@adelphia.net
Date: March 22, 2003

Comments

My prayers go out to all the little SMA angels they are true warriors.Your website is very informative. Thank you for having it. Until my nephew and his wife had there little darling Jimmy I never knew much about SMA.  My heart goes out to all the parents and love ones of these precious children. 

Name: Zoila Mason
Email: dnz@ctcweb.net
Date: March 26, 2003

Comments

We are so thrilled to see so many of your children living happy and healthy with this disease. We finally have some hope with our daughter Baylee, 5 months, Type I. Thanks for all your information and support.

Name: Erinne Thompson
Email: hodgewhanau@msn.com
Date: April 05, 2003

Comments

I thought I found this site by accident, but I realized there are none...I wish for you all love, light, peace and strength on your journeys....

Name: Angel Kathi
Email: cupidstuckme@yahoo.com
Date: April 07, 2003

Comments

Hello! What a tutching and informitive place,really wonderful. I cant amagine the pain you've gone threw. Im so glad you've made this site and Im sure you've relized by now your not alone. I would like to invite you to visit us. We are a all woman online group from all over the world. We have fun and lots of support. I hope you'll visit and maybe join. :) It would be nice if you did. I hope we hear from you. (((hugs))) http://seangels.org

Name: ShereeHoskins MoM to Steven Sma type 1, 16months
Email: shoskins56@earthlink.net
Date: April 10, 2003

Comments

Name: Roberto Camiro
Email: rcamiro@hondaplaza.com.mx
Date: April 12, 2003

Comments

I'm father of a SMA II kid. This site is one of the greatest things I ever saw to take out the spirit of fight, to give the soul working on one focus objective: The cure. Thanks.

Name: Angel Cally
Email: cally@ica.net
Date: April 13, 2003

Comments

Hi there!!!!!! I have been trying to welcome you to Simply Enchanting Angel's for a few days now. I finally found this guest book.  This web site is wonderful!!!!!!!!

Name: Nicole
Email: actofmyown@yahoo.com
Date: April 14, 2003

Comments

Wonderful wonderful site. Oh this is beautiful. I love the gold. Thank you for being here.

Name: Stacey Jenkins
Email: staceyj@dalejr.net
Date: April 17, 2003

Comments

I didn't know much about SMA before I found this site.I don't know what I would do if I ever had to face a challenge like the families of the children diagnosed with SMA.This is something that I think everyone should be aware of.To all those who have lost a loved one,stay strong and always remember there are holes in the floors of heaven and they are always watching over you.My heart goes out to all.

Name: nicole
Email: njuntunen@hotmail.com
Date: April 28, 2003

Comments

my son was recently diagnosed with sma 1. I am having a hard time grasping the fact my son has so little time. When he is only 2 months old. If any one has any advice for me or my family please contact me. Thank you!

Name: elizabeth
Email: bethlette2003@yahoo.com
Date: May 01, 2003

Comments

i need the address for sma support i have a donation to give and need to send it off soon.

Name: Stephen and Nancy
Email: purfectdream-expressions@purfectdream-expressions.com
Date: May 07, 2003

Comments

We just want to say we have never heard of SMA up til now. It is heart touching to see someone with the determination to spread the word of SMA ao others may help in support and comfort to those who are directly affected ny SMA. Nancy and I would be honored to create a Greeting Card sponsored by SMA that would have there website link on the Greeting Card everytime someone sends the card so that hopefully the world will realize what SMA as the more poeople know, the more people concerned giving strength in numbers. Keep up the wonderful work and God Bless You Nancy and Stephen purfectdream-expressions@purfectdream-expressions.com

Name: Patricia Hall
Email: ahimsa369@yahoo.com
Date: May 08, 2003

Comments

My daughter Harmony Rodriguez 6/3/91-11/22/91 is another SMA angel. I have learned from your site that medical details have change significantly in the last 12 years, but the experience of parenting a little one with Werdnig-Hoffman's is much the same: excruciating, miraculous, the worst kind of hell, and the most precious opportunity to transcend indescribable suffering as you follow in the footsteps of saints and angels. If anyone needs or wants to chat, I would be pleased to hear from you.

Name: mary ann
Email: july1099@pldi.net
Date: May 22, 2003

Comments

i am a babysitter of a little girl, now 2. she has been going through testing and i found out this morning that they believe she has sma. God bless each and everyone of you that are and have gone through this. i know the family and i will have a tough time during this.

Name: mary ann
Email: july1099@pldi.net
Date: May 22, 2003

Comments

i am a babysitter of a little girl, now 2. she has been going through testing and i found out this morning that they believe she has sma. God bless each and everyone of you that are and have gone through this. i know the family and i will have a tough time during this.

Name: Deb Mitzimberg
Email: debbie@theoldgrind.com
Date: May 27, 2003

Comments

My Grandson died of SMA Type I, Werdnig-Hoffmann's Disease, three years ago. It was the most heart-wrenching experience of my life. I can't even begin to imagine what it did to my daughter and son-in-law. He was a beautiful boy, looked just like Emily, his mother, did when she was born. I pray for an end to this horrific disease, every child deserves the chance to live his childhood. My daughter is now pregnant with twin daughters who have already been tested for SMA. They will be healthy. I know my daughter will make sure they grow up knowing of their older brother, and that they will know of the disease they potentially carry. God bless you all.

Name: NAKI
Email: nakita_89
Date: June 03, 2003

Comments

I hope your son is going to be ok. I do not know much about SMA. but i know what pain is I have very bad basal migraine headaches every day and have to deel with pain every day.I feel for you son. I can to know about him through jenna. she is a very kind and carring girl. i want you to know you are heared about you son's illness. I wish you well

Name: Sue Lockhart
Email:
Date: June 05, 2003

Comments

My daughter came to this site often and our angel Tahj cooke passed and 4 weeks later his mother Brandy Hatfield (my daughter) is no longer with us anymore she is went through the golden gates to take care of my sweet baby Tahj. But she was taken from me she was found murdered I have lost them both. God Bless you all, Sue Lockhart

Name: Lela Ortego
Email: lela340@cs.com
Date: June 05, 2003

Comments

Hi , My name is Lela & I have a grandchild with SMA Type 1, she is 5 months old. We also lost another grandchild to SMA a sister to this child.This website is wonderful for the information that it has. My grandchilds name is Julia Marie Ortego the daughter of Lisa & Craig Ortego.

Name: facial forced
Email: adualtweb@pisem.net
Date: June 07, 2003

Comments

Thank you for developing this very good site !

Name: Levaleai Gogo
Email: vakie30@hotmail.com
Date: June 13, 2003

Comments

Hello, my name is Levaleai Gogo, "YOUR WEB SITE IS SO WONDERFUL"! Thanks for sharing your precious thoughts....

Name: HOMEBOY OWERRI ASABA
Email: homeboyowerriasaba@aba.com
Date: June 21, 2003

Comments

WOH! WHAT A GREAT SITE. I THANK YOU SO MUCH FOR SHARING YOUR WEB SITE, IT IS VERY ENCOURAGING AND ALSO INSPIRING TO ALL THOSE NON-BELIEVERS. KEEP ON WITH YOUR GOOD WORK. I BELIEVE YOUR WEB SITE IS A NICE PLACE TO BE. I PRAY TO SHARE THOUGTHS OF COURAGE AND OTHERS NEST TIME. BYE FOR NOW. BEST REGARDS, HOMEBOY OWERRI ASABA, FOR LADIES.

Name: julie sutton
Email: fprincesssexy@aol.com
Date: July 09, 2003

Comments

although i don't have any children of my own i do however have a 3yr old niece and a four year old nephew and it is very enlighting to see that if your child has been diagnosed with this disease there is a place you can come to!!

Name: Sara
Email: sgiufrida@aol.com
Date: July 11, 2003

Comments

Olá meu nome é Sara, e moro no Brasil, meu filho de 4 meses é portador dessa terrível síndrome... A nós pais dessas crianças inocentes, só nos resta amá-los, e agradecer &agrave; Deus por ter-nos enviado um anjo para passar uma temporada conosco. Sara.

Name: Kim Vaughan
Email: kvaughan03@cox.net
Date: July 13, 2003

Comments

This site is wonderful. It brings back bittersweet memories for me. I lost a daughter to Werding-Hoffman in 1991, she was 13 and the light of my life.

Name: John
Email: jnardella1@netscape.net
Date: July 31, 2003

Comments

I just wanted to say that I was once in a relationship with someone who had SMA and she was a very special person. She didn't allow the disease to weaken her spirit or will. She was an extremely intelligent and talented individual. She had strength of mind, despite her physical weakness. Circumstances forced us apart, but she made a lasting impression in my life. Hi Lisa, I hope you're well.

Name: Liliana
Email: lilianaostojic@hotmail.com
Date: July 31, 2003

Comments

In memory of my beautiful angel, Yelena, who lived with SMA2 for 20 long years and her little brother Rasa, who's 12 and who's still fighting. Aunty Lili

Name: Judy Kelley
Email: mobnanjudy@prodigy.net
Date: August 10, 2003

Comments

This is a beautiful web site, and I was crying as I viewed the contents. There is a very special angel by the name of Sara Rose Greene. I am not biologically her grandma, but my son is married to her aunt, so I guess that qualifies me as a grandma. We all love this beautiful strawberry-blonde baby, and I pray with my heart 24 hours a day for a cure for all of our angels afflicted with this devastating disease, and all of their families and loved ones. GOD bless one and all for the support coming from this web site. Gratefully, Judy Kelley, Riverside, CA

Name: Jennifer Layne
Email:
Date: August 12, 2003

Comments

I didn't know anything about SMA until my sister moved into a new neighborhood and met a woman we actually went to high school with. Her little girl, Ashley, who is now three, was diagnosed with SMA. I have to say that Ashley's Mom is amazing. Every time I read about Ashley - I cry. But, Jenny, ALWAYS seems positive and is doing everything she can to save her child. She is truly inspiring. She has organized so much to help SMA research. If it wasn't for Jenny and Ashley, I am sure I would not be aware of SMA. This is a horrible disease. I look at my healthy toddler and I can't even imagine...

Name: Fiona
Email: Fiona24988@aol.com
Date: August 25, 2003

Comments

This site should be voted best site made. I come on every day just to look at all the smiling faces and the lovely music. They live on and will always be remembered, even more so, but without pain. I'll light a candle this year. Fiona x

Name: ELIZABETH R CAPPER
Email: elizabeth.capper@ntlworld.com
Date: August 25, 2003

Comments

In memory of my beautiful Angel Michael Anthony James.Born 25/03/02 and died 18/07/03.An Angel not destined for this world, too beautiful, too perfect,Goodnight God Bless darling son, sleep safely in the arms of Jesus.

Name: Carrie
Email: carrie_anhorn@yahoo.com
Date: August 26, 2003

Comments

I was told in one of my e-mails that this is a great place for support. My four month old daughter Kyleigh has been diagnosed with SMA type 1. I was hoping to find information on lots of things, ventilation, feeding, etc., mostly stuff about daily living. Trust me I understand that not every case is the same, but I know that there are a lot of hard decisions I am going to have to make soon. If you could please e-mail me an tell me what has and has not worked for you I would really appreciate it.

Name: Carol Box
Email: laptop@northwestsurrey.freeserve.co.uk
Date: August 26, 2003

Comments

As a new internet 'surfer' I typed in Werdnig Hoffman's Disease, and was surprised that SMA Angels appeared. I had never heard it called that. My two baby sons, Paul, 2.11.74-20.1.75 and Joseph 20.2.80-14.6.80 are beautiful memories. At the time it was a very painful, lonely experience for my husband and myself. How very comforting for everyone that you produced this wonderful site. Many, many thanks. United in prayer with you all

Name: sharon finlay
Email: sharonfinlay@aol.com
Date: August 30, 2003

Comments

I came across your site when i was looking for poems about angels.My husband stevie and myself have our own little angel Sarah she pass away at 8months from sma and like your own little angels she will never be forgotten.

Name: Kathy
Email: kathbludaniel@hotmail.com
Date: September 01, 2003

Comments

I absolutely loved the website it was so beautiful it brought me to tears. I have a son with sma type 2 and he is 14 months old.. I would like some contacts on how I can talk to people either on line or even if there is anyway you can talk to Dr Bach on line DOES ANYONE KNOW?

Name: steph
Email: smartypants@z6.com
Date: September 03, 2003

Comments

My heart goes out too all the kiddies that suffer from sma keep fighting little angels i dont know anyone with sma buti know some with a similar type of thing and ive seen how hard it is so keep trying love too you all STEPH xxxoooxxxoooxxxooo

Name: Kathy Dillon
Email: kathbludaniel@hotmail.com
Date: September 10, 2003

Comments

I would like to say that this is the most beautiful website ever well done! I have a son who has sma type 2 he is now 15months old and doing well, he will always be an angel in our eyes I wish everyone good health and God Bless each and every one of you and your families

Name: ben dyball
Email: dibble247@hotmail.com
Date: September 15, 2003

Comments

its a great site,keep up the good work

Name: Marilyn Juvera Pu'u
Email: emalyn007@aol.com
Date: September 17, 2003

Comments

I was unaware of this genetic killer of infants and toddlers until my cousin Sgt. Deutsch Pu'u and his wife Eustasia said their daughter Eustasia Alanis Gertrud Pu'u was diagnosed with Spinal Muscular Atrophy. Our family prays that there will be a treatment soon to help all of our SMA Angels. Keep on fighting Alanis and God Bless You and All SMA Angels.

Name: Kelly Dehart
Email: kellycoy@earthlink.net
Date: September 26, 2003

Comments

I am an aunt , but when a child is born into the family it takes ahold of everyone Please remember that each child is born for a reason. i think these babies are gods way of saying be thankful and follow these angels for one day we will all meet again, but to meet again we must make our place and be right with the lord. then and only then will we see our babies again!

Name: Peter
Email: autos@rentacar-int.com.ar
Date: October 02, 2003

Comments

Hello, congratulations for your site!

Name: Rebecca
Email: thebudds@in.com.au
Date: October 04, 2003

Comments

What a heartening website to come across. I have recently lost my baby daughter Brooke to Werdnig Hoffman's disease at the tender age of 7 1/2 months and I know the terrible pain all the parents are feeling in the loss of a precious angel. Thank you for making this site. It was a privilege to read it.

Name: Kimberly
Email: kimmisue89@aol.com
Date: October 20, 2003

Comments

this is a awesome web-site for families to sign-it was a great idea. Kimberly

Name: Julie Sanders
Email: jasander@cub.kcnet.org
Date: November 05, 2003

Comments

My daughter Carriejo Marie Sanders was born Sept. 4, 1998 and became an angel Jan. 1, 1999. She had SMA 1.

Name: Amy Myers
Email: speedylps@aol.com
Date: November 06, 2003

Comments

steph, what a wonderful gift you gave your friends and family when you brought your angel into this world. I can only pray the one day maybe god will send me such a special bundle of joy just like he gave you. Your baby is beautiful and i have enjoyed seeing her again. sending you love steph.

Name: Michelle Elder
Email: jelder@semo.net
Date: November 13, 2003

Comments

Name: Barb Jenkins
Email: love4kiddos@aol.com
Date: November 23, 2003

Comments

Does the owner of this website happen to know Michelle Irvine who runs SMA Angels.com? I have been trying to reach her with no luck. If you know her, will you please contact me at my email address and let me know how I can get in contact with her?

Name: jason williams
Email: jason@williams2368.freeserve.co.uk
Date: December 01, 2003

Comments

me and my partner are glad there are people out there trying to get funds to cure this terrible disease, we are only 24 and 22 respectively from wales. we lost our son 9 months ago he was aged two weeks, i think your web site is great thank you.

Name: jayme mckinley
Email: jaeann11@sbcglobal.net
Date: December 21, 2003

Comments

just a mommy to an angel herself... passing through....my angel is STEPHANYJO ANN NOYCE....and no.... there are no pictures.... yet.... the wonderful mommy that started this site has been patient enough with me all these years...to just let me check in and leave....we all know what grief can do to our lives and our very best intentions....SOME DAY there will be pictures up....some day.... but i happened by chance today.....to write down a folk song that is on JOJO'S page....just to show someone....and thought i would peruse through the beautiful tributes for as long as i could handle.....and ADAM MICHAEL DAVIS...shown through like the gorgeous angel he is.....as most know how it feels.....how grief can be SO very specific...i've never seen his pages before today...not sure why...but to ADAM'S mommy ...if she checks here also.....i know no other way to let you know how i feel...so here goes...the day you cried is the day i cried.....the day you felt lost and empty is the day i did too..and every year.....on november fourth...i'll be thinking of a mommy that is crying in remembrance...not like we do not cry a little every day....but you know of what i mean...i am truly sorry for your loss as i am sure you are of mine...our angels went together that day....and she was a tad bit older so i'm sure she "took charge"..guiding them through....so today...someone TRULY knows what you are going through my dear....right down to the very day!!! I send you peaceful thoughts...warm comforting embraces....and the lovely compassion only or little "club" can share.....

Name: delois webb
Email: dewhisfriend@aol
Date: January 05, 2004

Comments

i he have a nephew who is 15 months and and cannoT hold his head up, walk, talk, know muscle mobile skills and i have read about this on saturday in the paper and would like to know more.

Name: delois webb
Email: dewhisfriend@aol
Date: January 05, 2004

Comments

i he have a nephew who is 15 months and and cannoT hold his head up, walk, talk, know muscle mobile skills and i have read about this on saturday in the paper and would like to know more.

Name: Sandra Tranby
Email: wtranby@earthlink.net
Date: January 06, 2004

Comments

What a beautiful website and such a beautiful honor for all these brave children. I look forward to hearing from you, as I would like my son's life to be remembered. Thank you

Name: Tasha Moore
Email: tasha_n_tony@hotmail.com
Date: January 06, 2004

Comments

Name: Tasha Moore
Email: tasha_n_tony@hotmail.com
Date: January 07, 2004

Comments

Name: Laverne Griffin
Email: L3Griffin@Aol.com
Date: January 15, 2004

Comments

Makalia: Just looked at your pictures, what a beautiful young girl you are. Hope you are having a good week. Hugs Laverne in Tennessee

Name: Ronae' H.
Email: junipersecho@yahoo.com
Date: January 16, 2004

Comments

Waves hello to Makalia. I am with The Hugs & Hope Club. Sending lots of Rainbow Hugs & Wishes from Michigan : D

Name: Emily
Email: ChrEmi123@aol.com
Date: January 29, 2004

Comments

I will love to help out the S.M.A. group

Name: Sandy Goheen
Email: samnjohn@nexicom.net
Date: February 14, 2004

Comments

Visited this web-site and it is wonderful,very informative.My great-nephew was diagnosed with sma. He is such a cutie,so hard to believe he has this horrible illness. I hope and pray we can find a cure soon for Baby Jacob and all the children with sma.

Name: kendall nobles
Email: methmonster23@yahoo.com
Date: February 22, 2004

Comments

our prayers are with each and every one!

Name: Jo Ledoux
Email: rulst2@hotmail.com
Date: February 28, 2004

Comments

I was looking over the FSMA site to see if there were any updates and tripped across this site. What a BEAUTIFUL piece of work! I may be a victim, my son has become an angel too soon, but I still pray for a cure. Is there any way for me to add my son's story to the other's on this site? Thank you for this inspiring tribute.

Name: HEIDI
Email: cbidle@ameritech.net
Date: February 29, 2004

Comments

YOU HAVE DONE A GREAT JOB I AM JUST STARTING MY SON CAME HOME FROM THE HOSPITAL 2-28-04 TO BE TOLD WE ARE DEALING WITH SMA. HE WAS A STRONG HEALTHY BOY IM NOT SURE WHATS HAPPENING I WAS LOOKIN FOR ANSWERS I GUESS MY PRAYERS ARE WITH ALL

Name: Tenaya
Email: tenayamarler@hotmail.com
Date: April 05, 2004

Comments

May God bless each and every family! You are truly stong parents! I look up to you!

Name: jayme
Email: jaeann11@sbcglobal.net
Date: May 01, 2004

Comments

Happy Birthday to StephanyJo Ann Noyce......she is 17 years old today.......fourteen of those years as an angel.......i was holding her by now.......

Name: Tracy
Email: dolphin3631@aol.com
Date: May 11, 2004

Comments

God Bless!

Name: Nicole
Email: SaVeMeNow4Evr@aol.com
Date: May 12, 2004

Comments

I just wanted to send out my sympathy to all the families that have gone throught this tragedy. I am luck to have 2 healty children. I hope the best for you all

Name: UZOAGBA
Email: uzoagba@yahoo.com
Date: May 17, 2004

Comments

I LOVE THE PAGE.

Name: Ruth
Email: regiroir@cox.net
Date: June 23, 2004

Comments

Our grandson James Patrick Giroir is Our SMA Angel. He was born August 28, 2002 and he became our Angel on December 14, 2002. I have enjoyed reading all the letters and comments on the web site and in the guest book.

Name: Elizabeth Gobin
Email: LizzieG31@aol.com
Date: July 03, 2004

Comments

Your stories have touched my heart.

Name: Sosefina Sivanu-Holi
Email: hands411@hotmail.com
Date: July 03, 2004

Comments

To Eustasia and Deutsche Puu and daughter Lenei, I am so sorry to hear about baby Alanis. I can't imagine what you're all going through right now. Be strong, she's with her Creator and she's not suffering anymore. May the Lord comfort you and wipe away the sadness in your hearts. God Bless you! We all love you!

Name: Karen Farris
Email: jean0570@bellsouth.net
Date: July 07, 2004

Comments

I have a child with SMA. This site has helped out a lot. I am actually e-mailing one of the families of one of the SMA children. They are all in my prayers and thoughts even if I don't know each and everyone.

Name: Marilyn Juvera Pu'u
Email: marilyn.juvera@lennoxind.com
Date: July 08, 2004

Comments

To my cousin Deutsch his wife Eustasia and daughter Lenei, God Bless You All for giving Alanis a beautiful life of love & happiness. *Rest In Peace Alanis, You will never be forgotten*

Name: Loving you with the Love of the Lord
Email: JesusSaves@yahoo.com
Date: July 09, 2004

Comments

Eustasia Alanis Gertrud Pu'u, May you rejoice in Heaven with our Lord and Savior! God makes no mistakes.....Thank You Jesus! God Be With You Always,

Name: linda buck
Email: linda23buck@yahoo.com
Date: July 10, 2004

Comments

We lost our grandson last Aug when he was 5 1/2 months old. Wayland Marshall West. He had TYPE 1. We had so many had never heard of SMA. I wear my SMA pin everyday in hope what people will ask me what is means. I love the web site and was drawn to it from the chat room. God BLESS, Linda Buck San Antonio Texas

Name: Ashley Sanchez
Email: adragonfly99@aol.com
Date: July 22, 2004

Comments

My little girl Destiny Hope Sanchez, has SMA 2, she is the light of my life. We are still holding out for our cure!!!

Name: Helen Baldwin
Email: jeffreyb@skybest.com
Date: August 09, 2004

Comments

Our initiation to SMA came when our third baby, Jeffrey, was diagnosed with Type 1. I have written a book about our brief time with him, The Jeffrey Journey (http://www.trafford.com/robots/03-0953.html which was published last year. Included in the book is a special dedication, with a section to honor those with SMA, and a memorial. There are currently hundreds of names listed, but I would like more! If you would like to add a name for the upcoming revised edition, please send the name(s) as you would like it listed, including a nickname if desired, and whether it belongs in the honor or memorial section. In order to have the books ready in plenty of time for Christmas, I need to have the names by August 31, 2004. Feel free to contact me if you have any questions, and PLEASE share this request with any other SMA families you keep in touch with. Thanks!

Name: rebecca higgs
Email: higgsr@kmhs.sa.edu.au
Date: September 21, 2004

Comments

My three year old god daughter has sma. As i am only 17 this has opened my eyes to what is out there in the big world for not only me to face but her Tiarra also. She would be one of the most amazing people i have ever met. She makes me stronger, just by watching her grow. If anyone out there is willing to help me start a Sunflower Day, making people aware that SMA is out there. This would be a huge opportunity to raise money and to give knowledge. This site has helped me understand better and now i would like to help out and make others aware.

Name: Kobie Pretorius
Email: AJPretorius@eskom.co.za
Date: October 27, 2004

Comments

Thank you for a wonderful website, I love browsing around on the website for all the wonderful information and News on SMA. We're staying in Kriel, Mpumalanga, South Africa, and we don't have excess to all the latest news on development etc, and it is good to know their are others out there that already overcome obstacles that look huge for you at a specific point of time.

Name: Tara Lowe
Email: tlowe05@yahoo.com
Date: November 18, 2004

Comments

Thos web-site has really touched my heart. My nephew just passed away from SMA type1 and he was such a blessing. He passed away on October 21st,2004 and it was the hardest thing i have been through, I love him like he is one of my own. God only gives SMA babies to special people and I know all of the parents are special just like my sister Jenny Broussard is!! God bless you all, my sister is one of the strongest people i know i found that out when she had to go through all of this. I give every parent and every person that has gone through it or is going through it a big pat on the back and all of yall are very special to me. Thank you for this web-site and my sister is working on joining my special little nephew to it. Thanks for making me understand that it wasn't just my sister that has gone through this!!!!

Name: Sandee
Email: sangar@monroeaccess.net
Date: December 14, 2004

Comments

I am Conner Riggs grandmother. Five years ago around Christmas time, we learned that Conner had sma. He lived on for almost three years with the disease. We experienced all the emotions that all of the families do - shock, disbelief, anger, sorrow. But the most important thing that lingers in my mind is that we were able to know that sweet little boy. We were able to love him and be loved by him. He will always be in our hearts and on our minds. We collected many memories - pictures, videos and experiences. He lives on here in our memories and in heaven as our angel - there to join those who went before him and to greet those who have gone since. Merry Christmas, little man.

Name: Lisa Sheppard
Email: lisasheppard@att.net
Date: December 22, 2004

Comments

Thank you for having this website. We also have an SMA Angel named Grant Thomas Sheppard. He was born September 2, 2004 and went to heaven on November 18, 2004. It was helpful to read about Devon's story.

Name: Merlin & Anna Valin
Email: soslee@bellsouth.net
Date: December 25, 2004

Comments

We were introduced to a beautiful angel with SMA.She and her family have won our hearts. We had not heard about Sma until we met this family. God Bless...Merlin & Anna Lee

Name: Levaleai
Email: lvgogo@hotmail.com
Date: December 30, 2004

Comments

Ooh my gosh!!!! To my cousin DEUTSCH and EUSTASIA, I am so sorry to hear about your daughter LENEI. Be strong, she with our Lord Jesus..... RIP Deutsch howz Melody, Standly, Micheal, Anthony and everybody in Samoa... Send my alofas to all ya'll out there...

Name: Lorrie Stuper
Email: lastuper@alltel.net
Date: January 20, 2005

Comments

God Bless the Strength of the parents to stand by their children

Name: hannah
Email:
Date: January 23, 2005

Comments

I thank you for making this website God bless you you are all great Christian angels yourself

Name: Nancy Claar
Email: Napa1950@aol.com
Date: February 18, 2005

Comments

Had a daughter that died 34 years ago because of Wernig-Hoffman disease. I feel for all of you that lost a loved one.

Name: Debbie Price
Email: dprice88@hotmail.com
Date: March 02, 2005

Comments

Brian I am so sorry. I am just picturing her running in heaven. I now you and Stephanie probably still wish too have her here and for that I am so sorry for your loss. I am praying for you guys and I have my church praying for you also. In Jesus love Debbie

Name: Porsche Kakazu
Email: pkakazu@ups.edu
Date: March 02, 2005

Comments

Hi, I am an occupational therapy graduate student and was wondering if any of the visitors to this site and/or creators of the site would be able to help me with my master's thesis at the University of Puget Sound. The project is to determine the current practices of occupational therapists working with children in early intervention (0-3y). Please contact me if you can possibly help! Thanks so much - Porsche PS - my niece has SMA type I and is the motivation for this research

Name: Jackie Robertson
Email: moto64@consolidated.net
Date: March 14, 2005

Comments

I would like to thank you for adding my grandsons name Jace Robertson to your SMA ANGELS birthdays. My heart goes out to all the families who have experienced this terrible disease. God Bless You for this great website. In memory of our little angel up above, always in our hearts! Love you Jace!!!

Name: Tabatha Cox
Email: cox2004cox@aol.com
Date: March 14, 2005

Comments

I REALLY hope that there is a cure for SMA, my baby cousin Hannah Perkins was diagnosed with this it is hard for my aunt and my uncle, I could never understand there pain and suffering from having a daughter with this disease. Hannah is an ANGEL and a very smart girl and deserves the best!!! I pray that there is a cure SOON!!! All of these little angels deserve it and I wish them all the best!!!

Name: Alfonsina
Email: exequielsoler@yahoo.com.ar
Date: March 21, 2005

Comments

I´m 6 year old, I have SMA. I live in Argentina. I like know other child with this SMA. Alfonsina

Name: Holly King
Email: mhking@alltel.net
Date: March 28, 2005

Comments

Hello, I am 23 and my husband is 26. We have 2 children in heaven, they had SMA type 1. If anyone wants to talk, please write us.

Name: Scott Sheppard
Email: stsheppard@att.net
Date: April 05, 2005

Comments

Thank you for putting together such a wonderful site. My son, Grant Thomas, is an SMA Angel. He passed away in November 2004 from SMA I. We miss him greatly and wanted to let you know that I get a lot of therapy from looking at this site. The children and their families provide inspiration to me. God Bless you for making this effort! Scott Sheppard

Name: Melissa Milinovich
Email: melissa.milinovich@hp.com
Date: April 05, 2005

Comments

Hello All! My name is Melissa Milinovich and I am from Cincinnati, Ohio. I am 26-years-old and I have SMA I+. I was recently crowned as Ms Wheelchair Ohio 2005 and I wanted to introduce myself. Please feel free to contact me at melissa.milinovich@hp.com if you have any events you would like me to attend. During my reign, I plan to do anything and everything in terms of advocating for the disabled as well as spreading more information about SMA. Thanks!

Name: Bruce Carter
Email: Brewster259@Sympatico.ca
Date: April 15, 2005

Comments

I too have Spinal Muscular Atrophy. I my case I have it mildly. I was first diagnosed at age 13. I am now 46,and manage reasonably well considering. If you wish to contact me feel free to. Bye for now, Bruce Carter

Name: Rev. Staci
Email:
Date: April 17, 2005

Comments

What a wonderful site and wonderful service you provide. May you be eternally blessed.

Name: Julio Chojeda Torres
Email: juliocht@yahoo.com
Date: May 12, 2005

Comments

HI Friends, I am Julio Chojeda Torres, aged 56, have SMA-3, work for a school that serves people with different abilities, and live in Lima, Peru. Your page is beautiful! My love and understanding go to the families of all of those angels who are waiting for their other brothers who are still on this earth. You may read something about me at the following web site: http://espanol.geocities.com/juliochoto/ Sincerely Julio Chojeda Torres Lima-Peru

Name: Savannah
Email: suzieq1325@yahoo.com
Date: May 16, 2005

Comments

I love children! Looking at this site along with several others has shown me how valuable it is to take life for all it is. I know that these kids will always have this, but I believe they will hold their head high for the rest of their life. I am so proud to say that I have learned about this genetic disease so I can Help as much as I can.I hope to meet children with SMA one day so I can be a blessing to them as I Know they bring a blessing to all of those who meet them. I pray right now and always for the children, young adults and adults who suffer from SMA and their families. God Bless You All!!! :)

Name: Terry Holden
Email: holdentmtj2003@yahoo.com
Date: May 22, 2005

Comments

My wife and I are the parents of an SMA Angel. Jacob Blake Holden was born on April 24, 2000 and was called back to our Father in Heaven on January 24, 2003. He had work to do on the other side of the veil. We know how precious these Angels are and want everyone to know that our thoughts and prayers are with them. The only advice I would offer is to hold these Angels tight and love them like every day was the last, I can speak from experience I never got to tell Jacob goodbye. 

Name: Laura Stants
Email: laura@smasupport.com
Date: November 09, 2005

Comments

Hello! The guestbook was down for awhile due to spamming problems, but hopefully we are back up and fine again. Please leave your comments for others to enjoy...and I hope the kids on this site touch your heart as much as they do mine!

Name: Terry Holden
Email: Terry.holden@sbcglobal.net
Date: November 30, 2005

Comments

On Jan. 24, 2003 our Little Angel Jacob Blake Holden lost his battle with SMA Type II, he was 2yrs and 9mos to the day. Our hearts go out to all of those affected by this disease. These children are heaven's angels on earth, we love these children so. Daddy Loves and misses you so much Jacob.

Name: brady baudin
Email: babyrt2000@yahoo.com
Date: December 14, 2005

Comments

we think your web site is wonderful. we would love to have our beautiful son joseph in your web site. joseph has sma type 1. he is 2 years now. please let us know how we can get Joseph and his story in this site. God bless our angels, brady and maria baudin

Name: SHAVONDA CARTER
Email: MOOK@COMPORIUM.NET
Date: December 21, 2005

Comments

I HAVE A THREE YEAR OLD CHILD WITH SMA TYPE 2 AND NEED SOMEONE TO HELP ME WITH MY SITUATION PLEASE PASS MY EMAIL ADDRESS AROUND TO OTHERS.

Name: Ann
Email: kris.martle@pandora.be
Date: December 22, 2005

Comments

Hello, It is a very beautiful site. I'm living in Belgium. On the website from Kelsey* (Belgium) I saw the link to this site. I lost my daughter on the terrible disease SMA (17.05.03° - 06.06.04*). It is interesting to read the stories, I recognize many things. Ann (mother of Caroline Martlé*)