CommentsHi Kalair! I'm enjoying seeing all your new pictures as they come out! Soon it will be your 2nd birthday! Isn't that something?! I'm sure you will get tons of presents and will be able to do whatever you want for the day, and I hope you have a wonderful time!
CommentsOh how exciting! My Pooka has a guestbook! Anyone reading here will quickly learn just how silly about my precious granddaughter I am. She is the light of my life, ( my beloved husband and daughter understand ) She makes me happy everyday! Kalair is bright and beautiful. And, although a true SMA type 1 child, extremely healthy and happy at home with her Mommy. Thank you dear Lord and thank you to all of the angels that came into our lives with Kalair. All of our dear SMA family that have so generously shared so much of their own experience and time with us. To them we owe the extremely high quality of Kalair's life. Indeed, we owe them her very life. For though there is still no cure for this devastating disease, every year there is a higher percentage of children for whom the suffering has been drastically reduced thereby indefinitely extending their "good time". This makes them among the first generation to have the chance to hang around until the cure comes. As it will. Anyone doubting that should rent the movie "Lorenzo's oil" We are more lucky than Lorenzo's family was because we have been taught how to keep Kalair very comfortable while she waits for the cure. Again, I thank God! And again I thank all of our SMA family for all of the wonderful, practical knowledge imparted that enables us to avoid so much of the predicted suffering. Both those who are incredibly blessed to still have their angel children here on earth with them and most tenderly those who's treasured angels have returned to Heaven. Thank you all. The help and love from you all has been a direct answer to prayers that we prayed to be shown how to reduce the suffering that the doctors predicted. I also must thank Dr. John Bach for all that he has done for Kalair and so many SMA angels. He and the wonderful staff at the University Hospital at Newark New Jersey have made worked miracles for so many. By listening to what families need and offering practical, down to earth help. For not being afraid to be a little bit controversial to help even one child. Thank you to Dr. Anne Gettel at our local facility, Children's Mercy Hospital for supporting us with the prescriptions that we need. For respecting the fact that when you have to give a family a diagnosis/prognosis as devastating as SMA type 1, it is not unreasonable to let them try a few benign things that are a little controversial. We find ourselves with a blessedly healthy little girl that is living well at the age of 2 yrs and who's biggest respiratory challenge is an occassional normal 2yr old tantrum. (insert a big smile here please) Don't get me wrong, we are very proactive and downright obsessive where germs are concerned (smile) Lots has and continues to go into this wonderful outcome. It is all worth it. Every smile on her face punctuates that fact. My beloved daughter Liz is an amazing mother and caregiver. Kalair picked her well. I am so proud of them both. And so very grateful. I LOVE YOU KALAIR! "I know grandma, I know!" "Could you move over? You are blocking teletubies!" Ah, the luxury of an everyday routine. We are so blessed. Love to all who read here.
CommentsKalair, I love you with all my heart. And I am so lucky, because I get to see you everyday!!!! You are almost 2 year old, and I can remember the first time I met you and your mommy when you were just a little peanut, and now you are a BIG girl. I am so blessed that you are in my life. I will love you forever, and ever. So will uncle Tim, if you ever let him touch you again. No he will love you anyway. You stay healthy and keep sending Malia kisses for me everyday, and remember that I love you more than anything. You've got so many people that want to meet you soon, and a great mommy and daddy and grandma. We all love you so much, precious little almost 2 year old. I will see you later. Love aunt Stephanie and uncle Tim.
CommentsHello to Kalair and her family, Laura Stants sent me your site, it's really cute! Kalair is a beautiful little girl, I'll be thinking about all of you. Take care & Hugs, Sarah/Ashleigh's Big Sister Jan. 23, 1984 - Oct. 20, 1996 http://www.medt.com/~brunerjs
CommentsHi baby, I love you SO much, and I am so excited to have this website to show you off to the world! Thank you God for my sweet Kalair's life and continued good health! Thank you Laura for this beautiful site, and thank you to all of our wonderful SMA friends and family! Anyone who would like more information on what we do for Kalair, please email us! Again, I love you, Love You, LOVE YOU Kalair (AKA Pooka)!!!
CommentsHi Kalair! We are so glad that you finally have a guest book. We are truly blessed to have you and your Mommy as are friends (one of our bests!). You both have stuck to our sides through thick and thin and we are so grateful for you both. When we meet in May I will be expecting a big hug (and so will Sky). It is so hard to believe that you will be two in just a couple days. When we first met you were only about 9 months... Boy how time flies!! We love you and may God bless and keep you healthy always. See you soon....
CommentsHello Kalair!! What a wonderful and cute website that you have got here. Your pictures are wonderful and you are so pretty and grown up! We are so excited to get to meet you and your mommy in May...Lily and you will have so much fun! I will come back and check out your website often and hopefully you will have lots more pictures up! An almost 2 year old girl now...one day my Lily will be almost 2 and we owe you and your mommy alot for helping us get there. Keep that beautiful smile on your face pretty Bipap princess girl!!! We love you all!!!!
CommentsKalair! I saw all your pretty pictures and loved them! You and I have the same taste in men - Elmo Rules! I talked and talked to him while I was looking at your album. Happy, Happy birthday just around the corner.
CommentsHI Kalair, You look great! Love your smile. Looks like you and Evan like sesame street. We meet your Grandma Sallie at last years sma conference in Chicago and it's nice to finally meet you even if it's through the internet. Take Care, Skarleth Breton
CommentsHello liz and kalair This is brian lily's daddy i just looked at you site kalair and it is wonderful. You are a very pretty little girl. Hope to see you in may. take care brian barnett
CommentsKalair, I am Uncle Tim's big sister, and I just wanted to tell you Happy Birthday from me and Mia and Dontae. You have grown up to be a very pretty little girl. You have always been cute, but you are even more beautiful all grown up. I wish we could come celebrate your Birthday with you but Dontae has a cold. But I will be thinking of you tomorrow, say hello to Malia if you see her. I am sending you a big hug and kiss from all of us. Talk to you soon, Teresa, Mia, and Dontae
CommentsHAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR KALAIR...HAPPY BIRTHDAY TO YOU!!! AND MANY MORE!!! I hope you have a fun day today Kalair and get everything that you want. I bet it is fun getting to be 2 and making everyone do what you want them to do. I wanted to be the first to say it to you!!! I love you and can't wait to meet you and play with you in May!! Mommy says Happy Birthday to you too and to send you XXXXXXXXXX's and OOOOOOOOOOO's!!!!! Love Lily
CommentsHi Big Birthday Girl! You are TWO, how cool is that? We're sending wishes for a wonderful day and a happy, healthy year to come. Special birthday hugs and kisses from us. ~~Sue, Gene, Casey and Colin
CommentsHAPPY 2ND BIRTHDAY TO ONE OF MY BESTEST FRIENDS!! THREE CHEERS FOR YOU HOO-RAY-HOORAY!!! WORDS CAN'T EXPRESS HOW HAPPY ME AND MOMMY ARE FOR YOU TO REACH THIS MILESTONE... WHEN WE MEET IN MAY, WE WILL HAVE A LATE CELEBRATION FOR YOU AND A EARLY ONE FOR ME!! LOVE YOU, SKY
CommentsHappy Birthday Kalair - way to go little one!!!! Stay healthy and happy From a friend you have not met yet Lori Orchard
CommentsHAPPY BIRTHDAY POOGLE!!!!! I am so in love with you. You are such a blessing in my life. Wow! Two years old! I will see you tomorrow! All my love, Grandma
CommentsThis site is very cute- we liked seeing our picture together. Hopefully will see you soon- Brett
CommentsOh yeah, I meant to say HAPPY BIRTHDAY to you too. We have both reached two years old. May all your wishes come true today, I am sure you are having a blast. Love ya- Brett
CommentsHOPE your birthday was as FUN as mine Kalair! You are becoming a BIG girl just like me! Keep fighting! HUGS!!!!!!!!!!!!!!!
CommentsI love the music and the pictures. Kalair you are so beautiful in all your pictures. Definitely a little princess. Uncle Jonathan can't believe how
CommentsHi Baby Girl, I just wanted to say how much I love you (as if you don't already hear it 5 million times a day)! I am SO blessed to be your mommy, and I love every minute of being with you, precious two year old! I am sitting here right now listening to your bi-pap and music box as you fall asleep, and I am so grateful to God! I just checked on you and your monitor reads 100%, 91 heart rate...it doesn't get any better than that! Well, I guess I'll quit for now. I could ramble on forever, but I'll see you in the morning, and I can start again then. You're the best Pooka! Goodnight.
CommentsHi Liz & Kalair, Just visiting your site tonight and looking at all the pictures. Thanks for sharing with us. And Praise God for good days and good health. May God continue to fully bless you both. Liz, forgive me for not calling you yet. I am going to though! The every day routine gets the best of me these days. Busy,busy,busy! But please know that my thoughts and prayers are with you often. You show amazing strength & courage. And I have to say since I haven't wished it yet....HAPPY HAPPY BIRTHDAY SPECIAL GIRL!!!! We are all so proud of you. Your are a very special angel and with many other special little angels watching out for you in heaven. Love to you both. gina
CommentsHey K!! Mommy and I love your birthday pictures! I can't wait to see you in May and then we can plan our Sesame Street trip for when we are the big 3!! Love ya! Sky
CommentsKalair..your birthday pictures are so beautiful!! What a blessed little girl you are and now that you are 2 those little tantrums are acceptable (ha ha..dont' tell your mommy that). Lily and I can't wait to meet you and your mommy in May!! I just wanted to let you know that we saw your beautiful pictures of you birthday..and keep celebrating girlfriend!! Amy and Lily
CommentsDear Kalair, I just wanted to remind you of how very proud i am to be the parent of such a lovely child. Life gets very rough and sometimes seems the opposite of promising, but when i think about the wonderful beautiful child I have who i love to death, it makes my days much easier. It really sucks being in school and away from you as much as i have to be. I promise it will all pay off in the end. I can't believe that you are already 2 years old-it seems like i was just meeting you the other day, holding you in my arms as you gazed at the giant figure above you. I am doing all that I can so that the rest of your life can be a great one. You are a survivor, very tough at heart. I know this and can see it in you because your father is the same way. So you keep fighting Kalair, because you know that Daddy is fighting right along with and for you. Always. I love you soooooooooooooo much! Dad
CommentsDear Kalair, I am so proud of you Kalair. You are absolutely amazing! You are my inspiration, you are my hope. When I think enough is enough I just think of you. That is all it takes to keep me going, just one thought of you. I will NEVER forget the first day I met you. It was fate that brought us together but it is you that keeps us going. Gosh, I just remember how tiny you were and boy what a 'momma's girl'. I was determined to win you over! Now look at you. You are such a big girl now. I cannot wait to see you again. I will keep fighting for you Kalair, I promise! With love, Jennifer PS: Liz, I so respect and look up to you. You are an amazing mother. I am there for you, whenever you need anything, just say the word. God bless.
CommentsI just want to second what Jennifer says about you Kalair and Liz, you both are amazing and I am blessed to have you both as friend is my life!! Kalair I look at your pictures and I see a fire in your eyes, you are truly a fighter! And you have such a wonderful mommy who I look up to (even though I know I am ages older than her :-) and who has helped me so very much! You both are amazing and wonderful and we thank you so much for all you do! Keep it up girls and again we cannot wait to meet you in May!! Yeeee haaaa it will be so much fun (not to germy). Hugs to you both. Miss Lily says hello too!
CommentsHi Kalair!!! Hope you are having a good day today. I just wanted to look at your pretty pick on the computer to cheer me up today. Keep smiling. Tell your mom I said HI. Love , Aunt Kim from Illinois
CommentsI LOVE YOU!!!
CommentsDear Liz and Kalair, We just checked your website and we think the whole family is just gorgeous!!!! Liz,I wanted to thank you for helping Amy so much and mainly for being a good friend. Kalair, what can I say about you that hasn't already been said. Your smile and your sassy personality has brought many a smile to my face when Amy has told me another of your stories. Both of you may never know how often you are thought of in a loving way. I pray for you by name every night that God will keep you in His care until a cure is found. you are the true Bi-Pap Princess. Goodnight.
CommentsWell well, I get on here and see that my mom and dad have been visiting your website too and have said such nice and wonderful things. I am as always excited to see more pictures of beautiful Kalair. I had such a nice dream last night about a cure coming (I have thought so much about what you told me that I am now dreaming about it!) and our kids were totally healed and able to run around and play it was wonderful!! I am holding on for that time and when it comes Lily and I are making a trip to see you all and letting them get dirty together (and absolutely NO VIDEOS)!! Hugs to you all and talk to you soon.
CommentsLiz, she reminds me so much of chantel. I know she is in a good place but how I wish she was here for me. Talk later take care.
CommentsHello cutie patutie! You have gotten sooo big. I think you are going to be taller than Malia. I so enjoy going to your book and to Malias. I think of the two of you girls all the time. You are such a sweetie. Take care and give Lou a kiss from me. Here are lots of hugs and kisses for you. Love, Grandma Pam
CommentsKalair, Hi baby! I am coming to see you later, but I wanted to letyou know how much I love you. I am so blesed to be your Aunt and your mommy's friend. I would do anything in the world for you. I can't wait for the cure so that I can stand in line and wait for you to walk up to me and give me a big hug and kiss!!! I know you are stingy with them now, but I can wait. I love you pooka,and I will see you soon. Love Aunt Stephanie
CommentsTo my baby, Pooka...I am SO blessed to be the mother of such a precious two year old angel!! Every time I see your smile, every time I hear your voice, every time I watch you sleep, every time I kiss you and hug you and smell your sweet smell, I am overcome with joy and gratitude for the gift that is YOU!! We are so blessed not only with each other but with so many loving friends and family members who have helped us get this far. In May it will be two years since we found out you had SMA...all I can say is, what a two years!! We have met so many wonderful friends, and we have laughed and cried and learned so much with them along the way. It still breaks my heart that I have met some of my best friends through this devastating disease, but I know that God has a purpose for each one of these special people, and I am glad to be a part of their lives in any way I can. People make such a big deal of the time that I spend trying to help other families learn how to help their precious kids, but I only wish I could do more. If it weren't for helpful, generous people who shared their knowledge with us, we would not be where we are today. I want everyone's precious angels to be as happy and healthy as my Kalair for as long as God keeps them on earth, and I will continue to share knowledge wherever I can to help that happen. THANK YOU GOD FOR MY MANY BLESSINGS AND ESPECIALLY FOR MY SWEET DAUGHTER'S LIFE AND CONTINUED GOOD HEALTH!! AMEN! To my friends and family reading here, thank you for all that you do! You are all in my thoughts and prayers and we love you lots!! Can't wait to see many of you in May! Hugs to you all!!
CommentsI wanted to wish you and your mommy a very Happy Easter!! We are so very thankful to have you guys as friends and Mommy and I can't wait to meet you guys in person in May! I send you hugs and kisses Kalair and of course mommy does too. XXXXXXOOOOOO Lily
CommentsHappy THIRD Easter precious girl! You knocked my socks off today in that dress! I sure hope that the pictures that I took do you justice. Kalair you are perfect. You make me happy everyday. Love, Grandma
CommentsHi Kalair.. We wanted to let you know we stopped by. We are so excited that we are finally getting to meet you next month. Sky is so happy that she gets to play with one of her bestest friends. Your Mommy threatened that I have to carry you around the room so I could see how it is going to be when Sky gets as big as you. That's ok.. I don't mind my back breaking. As long as when it is when I am holding you. We are truly blessed to have you and Mommy in our lives. She is one of my best friends. We talk so much and sometimes it is just about any average day crisis. Got to love her! Well, I think Sky is about ready for bed. She actually took a good bath tonight (she didn't even hold her breath) but I think it wore her out. She sends you big hugs and kisses.. Talk to you soon. Love you tons!!
CommentsHi Kalair!I am also looking forward to playing with you next month. I really don't have "dress up things" but if you and Hannah give me some tips I think I could get Mommy to buy me some. Mommy is still not sure of the swimming thing. If she decides yes though, I could get my broviac wet, as long as Mommy changes my dressing when I am done. Besides, they say the chlorine is good for cleansing. She was telling me that we are probably going to have to label everything since there will be so many pieces of equiptment around.. we can't mess them up! Tell Aunt Liz to let Mommy know what's going on with rooms as soon as she can so Mommy could know if she has to reserve one for herself. Also tell her I said.. we want the Easter pics up. I love the one of Aunt Liz smooching you. Well, I guess I better get going. Mommy and I have to run to the bank (well we must pic up Gramma first, so Mommy doesn't have to take me in.) I love riding..... Love you, Skylar Elizabeth
CommentsKalair, Happy Birthday Beautiful Girl!!! Wish Malia was here to share your birthday cake with you. You two could have a really fun time making a mess with the cake. So glad to know you are doing good. Keep up the good work Liz. She is so beautiful. Love, Grandma Pam
CommentsHey K! We love the new pics.. The last one "nice pillow!" Sky can't wait to play with you next month. I can't wait to hold you and break my back.. Only kidden. We love you!!
CommentsWhat a beautiful princess!!! Kalair you get prettier and prettier with each picture! We can't wait to see you in May and Lily is to young but maybe she can play dress up too???? Give your mommy hugs and kisses from us! And of course we send you hugs and kisses too!!!!
CommentsWell all I can say is WOW! What an awesome site. Kalair you have had some really busy people working on this fantastic site. Liz thank you for always including me when you email about Kalair and all the super things she is doing. I am proud to know all of you. And Kalair you look MARVELOUS! :) Hugs from Taylor's best bud, Peg p.s. I'll bet Taylor is looking out for Malia. Taylor was always so caring and sensitive. I am sure my husband Paul who went to play on God's team in 1991 is also looking out for our buddies in heaven. Hugs to all, Love Peg
CommentsKalair, you are more gorgeous with every picture I get to see. I love your pretty yellow Easter dress. I hope you had a fantastic Easter!
CommentsHi, Kalair, You are absolutely gorgeous!! Your mommy and you looked so beautiful on Easter! Your granny sallie & you have opened my heart & soul to the power of love, family & Faith! Thank you my little angel! Love, Michelle
CommentsKalair, You look so beautiful in all your pictures on your website. Thank you for sharing with all of us!!!
CommentsKaliar, My mommy just helped me look at your website and your pictures, you sure have gotten big and very pretty too. I love the sesame street stuff, I just started watching Sesame Street because now we get it on our TV (didn't before) and I love Big Bird and the others too. I hope that some day we can meet in person but until then I will just have mommy log into your web page and let me look at all your new pictures. Love, Samantha Dodaro (SMA type I - 2 years old) P.S. My Mommy and Daddy send their love as well.
CommentsHi Kalair & Liz, I've been visiting your site and checking out all of the new pictures. You look absolutely great. So BIG and so BEAUTIFUL!!!!! Kalair, what a lucky little girl you are to have such a wonderful mommy to take such good care of you. Liz, I have some more pillows from my Aunt Edith - just let me know if you think you could use some. Love Gina
CommentsHello, just been on our website! She is really great!!! We can see, that you love your Sesame street! Sofia is doing well, having Problems with her teeth at the moment. She's got two now! Liz,I'd love to phone you again one day. Please mail me if you like, so that we can sort out a day. When I saw on and your husband on the website, I realised, how much we would meet you three. Lots of Love from Daniela and Sofia.
CommentsHi Kalair! You are SO beautiful! What a brave, strong, healthy girl you are!! Skyler has a GREAT role model in you! Casey has been visiting the website with us and she thinks you are very pretty and she says that she hopes that you'll be her friend, too (not just Sky's...she wants Sky to share!!)!! Take care, sweetie. You and your mom are the best - and SO lucky to have eachother!! Bye Bye for now!!
CommentsKalair, I love your new pictures! You are getting such a big girl and soooo cute. I was so looking forward to seeing you again in May:( Unfortunately I won't make it this year. My thoughts and prayers will be with everyone. I will miss you all.
CommentsKalair looks adorable, as usual! I was struck by a change in appearance between the time of her birthday and easter! So mature looking! Hope the rest of your Spring is grand!
CommentsHi Kalair, Liz and Sallie, Your web site is great. I could never get the pictures of Kalair open when they were attachments. She is so big and so beautiful. I glad she continues to thrive and is so healthy. You guys have done and continue to do great work. I know that she is a joy. Best to you all, Janet
CommentsHi, Kalair - You are still the prettiest princess in the world. I especially liked your Easter picture with your Mommy. I will print these pictures out and hang them in my office with all the others of you and Malia. We love you and your family. Give your Mommy and Daddy a big kiss for me and Rhylee. God bless you! Aline
CommentsKalair, your are getting so grown up. Hope all is well with you & your family.
CommentsKalair you are looking so beautiful! I got an idea from looking at your pictures. I am going to get Evan a tiny aquarium( that way I don't have more work)and a fish or two. You have such a smart mommy! Take Care and see you in May.
CommentsIt's a beautiful site, Liz. Kalair has certainly grown up. You are certainly invited to a Sunday night dinner, anytime. Greg
CommentsYou are a beautiful little girl Kalair. I love visiting your site. Your mommy has done a good job on it. I will be visiting your site often so that I can keep up with you. Tell your Mommy, Daddy, grandma, and Aunt Stephanie to keep up the good work!! Love, Keri
CommentsHI, i just wanted to say happy easter to you and sorry it is late.ilove you
CommentsHello!! Just showed my family your website, they thought it was really brilliant!! They said how big Kalair is! It was really nice talking to you yesterday, Liz. We have to talk again sometime on the phone. Lots of Love and Hugs and Kisses from Daniela and Sofia.
CommentsStill loving my princess(es) every day: Pooka and Liz! Kisses.
CommentsKalair you are getting sooooo big! You are a very special girl and an example to the world of God's awesome power. I can't believe you are already two years old. I pray everyday that God give you strength. You are my angel. Liz, you are an amazing mother. It is your determination and your strength that has kept Kalair going and everyone else. I thank God for you and pray that God gives you strength and encouragement. Love you both, Aunt Sheena
CommentsHi Kalair, It's me Samantha and I wanted to tell you how much I enjoyed looking at your web site today. I love all the sesame street themes and music and I like the winnie the pooh blanket in one of your pictures that you are laying on. I sure hope that someday we can meet in person but for now I will just check in on your website every now and then. Take care, sending lots of hugs and kisses your way. Samantha (2 years 3 months SMA type 1)
CommentsDear dear Liz and Kalair - You have a beautiful web-site, and I love the pictures! All the messages are wonderful, too. I'm so proud of you both, and hope you have a fun and uplifting time in NJ in May. Love you! G Jo
CommentsDear Kalair I was visiting your web site again. I have many times. You are truly a very beautiful girl. You always look happy and smiling. Your mother is a very special person---the way she cares for you can be seen (from a nurse and mother's view) as the very best. Also Beautiful Kalair I wanted to mention the letter from your daddy. It was beautiful. I know how much he must love you after reading it. I hope Mommy makes a copy for you so you will always have it. He must have a heart "as big as he is". Say hi to Mommy and grandma Sallie. They are very special people. So good-night beautiful and always remember there is some one "In southwest Virginia named Edith" who loves you very much. Also about the "cranes for a cure" I sent 1 in honor of you and 1 in memory Our precious Andrew "Booper". Good night Baby Girl! Stay healthy and beautiful!
CommentsHELLO, KALAIR. I'M LILY'S AUNT DEBBIE. I HEAR SO MUCH ABOUT YOU I HAD TO VISIT YOUR WEBSITE. YOU ARE SO CUTE. I WANTED TO THANK YOU FOR HELPING LILY SO MUCH. THAT CURE IS COMING AND WE CAN'T WAIT. KEEP THE FAITH. (((((HUGS)))). THE CORLEY FAMILY.
CommentsKalair, Me and Mommy were so glad to FINALLY meet you and your Mommy! We were sad the weekend came to an end so soon. Until we hang out to watch movies again, we will miss you. We love you both!
CommentsHey Kalair and Liz....we wanted you to know just how much we enjoyed your surprise visit! It was so exciting to meet you both and of course Grandma Sallie too!!! It was so very exciting! Kalair you are so much more beautiful in person..a true princess and you so gracefully let Lily watch her movies (even though you are WAY to big of a girl for them). We cannot wait to see you all again! Thank you both so much for being our inspirations and for all the help you have given us! We love you so very much! We send you hugs and kisses and wait patiently until we can see each other again. God Bless!!!!
CommentsHi Liz and Kalair! I told you I'd come to sign the guestbook eventually :)! Just stopping by to send my love to you. Visit my site too (it's new, so don't laugh) www.visionsfromthehart.8m.com. Love you! Miah
CommentsHello,LIZ AND kailair Is everything ok with you all?I havent heard anything after my last e-mail.Did you get my parcel??It`s been weeks since i have sent it.We lost everything on our computer last week,so I couldnt do much.Iam in Munich right now,showing my auntie and my uncle your webside.They really like it.Did you find anything out about the Tolerex?? Sofia is not too good at the moment.She has got temperature since 1 1/2 week.They say it could be a bladder infection.She is getting better slowly.Well,talk to you soon.Lots of hugs and kisses from Daniela and Sofia.
CommentsHello, I hope you had a good trip home from the conference. I was so happy to meet you and wonderful Mom. Thank you Liz for giving my sister Karen so much help about "the diet". Kalair is SO SO adorable!! love, auntie laura-marie
CommentsSallie What a lovely little girl, you must be a proud gramma huh. She's lucky to have such a wonderfully loving family! Keep the faith! We are praying for her. Much Love, Your friends in Canada Nidia (mom to Megan 25 months old undx severe hypotonia) http://ca.geocities.com/nid_kid/meginha.html xo
CommentsPookah, How are you doing? I hard you went and met a lot of your SMA friends. I am sorry that I couldn't come, but maybe next year. I love you sweetheart and miss you very much pook. So please call me soon so we can make plans to go and hang out. I love you and so does uncle Tim, so always remember that..., If you see Malia would you send her lots of hugs and smooches from me... I love you baby, Aunt Stephanie
CommentsHi Baby, I just wanted to say how much I love you! I am grateful for every day and night with you! All my love and hugs and kisses Pooka...sweet dreams!
CommentsDear Kalair - You are very beautiful and you have a very special Mommy. She is helping me with my Granddaughter Saria Clark who is now 1 year old with SMA Type 1. I can tell she loves you very much and even with her busy schedule finds time for people she doesn't even know. I enjoy looking at new pictures of you. Hugs and Kisses
CommentsI am visiting the sites of all of my favorite patients and am glad to see what a big and beautiful girl you have become. Say hi to mom and grandmom for me. I will keep you (and all of my SMA buddies )in my prayers. Love, Pat Dillman
CommentsHi Kalair and Liz! Haven't heard from you in a while, but just letting you know I'm thinking about you and visiting the site periodically. Love you both! -Miah
CommentsHi Kalair, I just checked out your site to see if there were any new photos, and sure enough there's a new one and it's the cutest yet! Tell your Mommy that Colin is home from the hospital and doing "okay". He sure is happy to be home! Sue PS Casey send hugs and kisses as well as Colin!
CommentsHey Pooka I just wanted to say hi and I miss and love you tons. XoXoxo LoveAunt Stephanie
CommentsKalair, Samantha and I just spent some time on your web site. We love all the new pictures of you and your family, you are getting so big. Samantha really likes the music you have playing. Your friends, Wanda and Samantha
CommentsHi Boo Boo, I don't write on your website much because I am so busy taking care of you, but I thought I'd make a quick entry now. I am grateful every day for my healthy, happy. little girl, and I am grateful that you are at home playing just where you should be. I am especially grateful today though, since you scared Mommy yesterday. I am grateful that you seem better today and I may never know what was wrong yesterday, but a temp of over 103 is enough to scare any mommy! Anyway, God is good, prayers work, and I am SO grateful for you, my princess, and your continued good health. Well, listening to your songs of joy over the monitor make me want to record them to share with the world. Anyone who met you and heard one of your songs or saw one of your many smiles in person, could never doubt the high quality of your life. But since I can't let you meet the whole world, I guess I'll just have to stop with the writing and go give you extra big hugs and kisses! With love to eternity, Mom
CommentsHi Kalair: You are so beautiful and such strength I see in your eyes. I can feel the love that surrounds you. That is the most important thing LOVE. I know your grandma from the Chopra boards and I am so happy she is your grandma. LOVE, Cat P.S I love your name - I have never heard of that name before
CommentsI knew Malia she was my little niece well god niece and i hated to see her leave us but now she is happy and i really miss her!!
CommentsHello Kalair and mommy Liz, I want to thank mommy for all the help she gives to my dear sister Karen for baby Connor. Connor is doing better, karen told me he was coming home this afternoon. Thoses nasty ear infections! Ugh! Thank you and we send you lots of hugs. love, auntie laura-marie
CommentsHi Kalair! I just want to say thank you God for my Kalair. She makes me happy every day! Thank you for keeping her healthy and happy and at home with her mommy. Thank you, thank you, thank you! Amen I love you Kalair! Love, Grandma
Commentshi. just wanted to stop and visit your lovely site, kalair is beautiful little girl. and to say thank you for visiting our site, and signing our guestbook. Val
CommentsHI sweet Kalair, Saria and Gma Sandy, Sage, Tara, Jeff and the whole gang from Woodward are stopping by to see your beautiful pictures and to look for updates on you!! Saria has been SO HEALTHY this past 1 1/2 month! We are so proud of her. She is the march of dimes ambassador for Woodward and was featured in Oklahoma City on Muscular Dystrophy. She is so much fun as you are to your family. You are so special and so sweet. Tell Mom to keep us updated in Woodward on your condition. Also Saria and her Mom met some more children from Oklahoma this week on Muscular Dystrophy, we are excited about that. For now, Love your Family from Oklahoma. Please visit Saria's web page. Love Gma Sandy http://www.geocities.com/sarias_place/index.html
CommentsHey K!! How are things? We miss you and Aunt Liz so much!! I wish we lived closer. Hopefully we will see each other before next year. We have to plan our Sesame Street trip together. That will be so much fun! Well, Mommy (not me) needs a nap so I better go (((HUGS))) and kisses. Love you tons, Sky and lazy Mommy
CommentsI LOVE YOU SOOOOO MUCH KALAIR, I thank God every day that you are home safe and happy with your mommy. My great big, healthy, 2 1/2 year old Kalair. Thank you God and all of our dear friends that shared their experience with us. Love, Grandma
CommentsThought I would sign since I finally got time, So sorry. Your are so beautiful, A little Angel keep smiling for us. You don't know Steven but he sends you lots of HUGS..... Sheree MoM to BaBy Steven 91/2 mo SMA 1
CommentsThinking of you and sending love to all.
CommentsHello Kalair and mommy Liz, I hope all is well with you. Karen has told me, you as always, been a huge help! I thank you. Kalair, what are you going to dress up as for halloween??? Whatever you will be, you will always be a cutie first! Have a great day, auntie laura-marie to our sweet 7 month old Connor!!
CommentsHey Kalair, Mommy and me were just out checking out your new pictures, WOW, you are getting so big and I saw your finger nails they are so pretty and long. Your mommy and daddy look great too but you just look so perfect, you really are beautiful! Well Seasame Street is on so I must get back to it before I miss something. I hope we can meet in person some day! Mommy and me send hugs and kisses your way! Samantha (SMA Type 1 - 2yrs 10mths old)
CommentsHey guys!!!!!!! Loved looking at the pictures! Maybe my mom will get going and do a web site for me, ha ha! Kalair, you are too cute! If Sky S. wasn't already my intended, (and I am a faithful kind of man) I would snag you up--quick! We really need to meet someday in person. I'd love to see who was the tallest. It would be very close ;) You hold your head up very good too. I hate to hold mine up and my scrawny neck won't hold up my big head anyway, :). Anyway, mom and I enjoyed looking at your web site. Take care and lots of love, Ethan and mom
CommentsI love you girls!
CommentsHey Pooka, Just wanted to come and see your ictures and tell you how much I love and miss you... I can't believe you are almost 3 years old... I love you SO MUCH POOKA!!!! Love your aunt Stephanie
CommentsOh Kalair, My heart just wells up with joy and gratitude. I am soooooo grateful to God for filling our lives with wonderful, simple, routine days and nights. Days full of your smiles and night after night of you tucked cosy and safe into your own little bed, humming a happy song on your BiPAP. I love you Kalair. Thank you God! Grandma
CommentsHey K! What's up? Not much going on here. Me and Mommy miss you and Aunt Liz so much. Mommy is FINALLY done being sick (shes been more sick than I have.. thats good, huh?) Now all of her bronchitis and cold has settled in her ear. NOW she has an ear infection. Boy, tough luck for her!! Well, I am really hoping to come see you VERY soon. Before next years conference. Well, give me a call soon. Love ya... Your best pal, Sky
CommentsDear Pook, sorry I have not been able to see you very much lately but daddy has no car at the present time. But I'm sure you understand and know that I'd spend every moment of my life with you if I could. In my times of deepest turmoil, pain, and lonliness, I think of you-and nothing seems so bad anymore becasue of the life of my flesh and blood who continues to live and breathe this air. No matter what happens in life, fail or succeed, I always have you, so always you and me. I love ya so so much. Daddy
CommentsHey Kalair and Liz, it's been a while and I just want you to know I'm thinking about you! Best wishes for the holidays, and I hope to hear from you soon (if you don't hear from me first :) ) Love, Miah
CommentsI was checking your site to see what a beautiful little girl you are. Mom helped me with a diet for another SMA little boy, Santino Delfino and she mentioned how well you are doing so I thought I would check it out. You look great. You and your family are in my thoughts and prayers.
CommentsHey Pooka, I just wanted to come and tell you how much I love and miss you. I can't believe how big you are, but I guess daddy gave you that gene... Baby I love you, and uncle Tim and I are coming to see you real soon... Kiss my baby for me, and let her know how much we love her.... I miss you baby, Aunt Stephanie
CommentsHEY K! WE WANTED TO STOP BY AND WISH YOU AND AUNT LIZ A VERY MERRY CHRISTMAS! WE HOPE YOU HAVE A GREAT AY. WE LOVE AND MISS YOU TONS!
CommentsMERRY CHRISTMAS POOGLE!!! What a blessed miracle it is to have just spent your third Christmas with you darling. What fun it was today to see you enjoy your presents as only a little girl of almost three years old can. I love you so. And I thank God for the gift of your presence in my life. Much love, Grandma
CommentsWhat a wonderful, inspiring website.
Commentsgod keep save and happy. You'll soon be 3. love you ana
CommentsHappy third birthday darling. Look at you! Three years old today! And the diagnosing doctors didn't think you would live to see one. Shows what they new. You fooled them didn't you? :o) And I have to thank Dr. John Bach for all that he has done for you and so many other SMA children. And a special thanks to the families who were so generous with their time and experience over two and a half years ago when we went looking for the help that was not offered by our local doctors. Thank you Anne and Mo and Stephanie and Mary and all of our dear friends for those first days of hope and for all of the wonderful, healthy, life that you continue to live. Everything that Dr. Bach and these friends told us so long ago was true. But most of all Kalair, I want to thank you. For fighting and living and for lifting me up and making me strive to be a better person. Thank you for coming here to be my beloved granddaughter. Perfect in every way. So much more than my feeble imagination could have imagined. You are my hero. You show me how to meet life and make the most of it. I pray that God will allow me to live a long life that I might spend it with you. All my love, Grandma P.S. Grandpa sends his love too, What would we have done without his love and support? I am so glad that we will never know. G
CommentsHOORAY! HAPPY DAY! HAPPY,HAPPY BIRTHDAY KALAIR! I LOVE YOU! GRANDMA
CommentsHey pooka, I just wanted to write to tell you almost HAPPY BIRTHDAY. I'm sorry it's been awhile since I have came to visit,but I've been really sick lately. You are so beautiful. I can'twait to come and hold you when I am feeling better. Keep mom and grandma on their toes for me. I love you princess and miss you too!!!! Love, aunt Stephanie
CommentsHappy 3rd Birth Kalair from Saria's Grandma Sandy. I can just imagine what an exciting day it was for your mommy and daddy, Grandma's and Grandpa's, Aunts and Uncles, Cousins, friends etc. You have a very lucky family to still have you with them and I pray you will be with for a very, very long time. Sandy Clark
CommentsHAPPY BIRTHDAY KALAIR!!! CAN'T WAIT TO SEE YOUR BIRTHDAY PHOTOS! I CAN'T BELIEVE HOW YOU'VE GROWN, YOU ARE LOOKING GORGEOUS!
CommentsHey K! We are so excited to be seeing you at the end of this week. Hope you have a safe trip and see you soon!
CommentsI had accidentally stumbled onto this website,as Kalair is your daughters name and my surname. I have enjoyed seeing your pretty photos, and wish u the best of health XXX
CommentsHi Kalair, Hope you are doing well and having a great day! My dog, Wyatt, sends you big slobbery doggie kisses. Love your buddy, MJ - http://caringbridge.org/ny/mjpurk/
CommentsHey Pooka, I'm glad you had a fun time visiting all your SMA friends... I can't wait to see you and your cheerleading outfit. I know you had a good time with all your SMA friends. I miss you pook, and can't wait to see you. Love you baby, Aunt Stephanie.
CommentsHi K! How was your day? Hope you it was great! Keep smiling and know Wyatt and I love you! Huggles and Kissems, MJ - http://www.our-sma-angels.com/Margaret/
CommentsHAPPY SPRING!!! How is your weather? It's been so nice here and Wyatt gets to go for a walk almost everyday. Hope you can go outside soon and enjoy the warm weather! Have an awesome day! Love, MJ - www.caringbridge.org/ny/mjpurk
CommentsHey there! Hope you had a great week! I'm doing alright. I'm so happy Spring has 'sprung'. Unfortunately, it's been kinda chilly here, so Wyatt and I haven't been on many walks. But that's ok because, Wyatt enjoys digging in the back yard. He digs and digs to find his favorite toy...ROCKS! If you want to, you can e-mail Wyatt and he'll write you back. He LOVES e-mail so much! His e-mail address is NewBrnCar4wyatt@aol.com . Please feel free to e-mail him anytime! Have a great week and remember, Wyatt loves you and so do I! Love, MJ - http://www.picturetrail.com/gallery/view?username=bshanson68
CommentsK your are a GIANT!! I cant believe how big you are getting! We just wanted to stop by and let you know we miss you tons and love you even more tons!!!
CommentsHi K!! Happy Easter! Lots of love, Aunt Tracy and your best pal Skylar
CommentsHAPPY EASTER KALAIR!!!! Well, would you look at you! Here it is your FOURTH! Easter! I love you so. You make me happy everyday Kalair. I am so proud of you and your mommy. And so grateful to God and all of our SMA friends for your happy life. I will see you tomorrow sweetheart! Love, Grandma
CommentsHello Kalair! Mommy and Grandma too!! I hope you are having a great day! I stopped by your site before I am to send an e-mail to your wonderful grandmother. You are such a cutie!! auntie laura-marie to connor reilly
CommentsHey Pooka how are you girl? I miss you a lot. I love your pictures,they are soo cute. why aren't there any of me in there. I love baby girl. From Auntie Shaka P.S say "hi" to kitty for my
CommentsIT HAS BEEN A WHILE SINCE I HAVE VISITED YOUR WEB PAGE AND MY MY WHAT A GREAT SURPRISE! YOU HAVE GROWN UP AND GOTTEN SO VERY BEAUTIFUL. I HAVE REALLY ENJOYED SEEING YOU GET SO BIG. I KNOW MALIA AND YOU WOULD BE BEST FRIENDS. HER BIRTHDAY IS JUST A FEW DAYS AWAY. SHE WILL BE FOUR. JUST WANTED TO SAY HOW MUCH YOU HAVE GROWN. I WOULD LOVE TO COME VISIT ONE DAY WITH YOUR AUNT STEPHI. GLAD YOU ARE DOING SO GOOD. YOU ARE VERY PRECIOUS AND BEAUTIFUL. TAKE GOOD CARE OF YOURSELF. KEEP YOUR PICTURES COMING. THEY ARE VERY GOOD.
CommentsHey Pooka, I just was thinking about you and wanted to stop in to say that I love you... I need to come and see you, and I promise I will real soon.Say hi to my baby girl and tell her I love her very much!!! And I love you very much!!! See you soon. Love Aunt Stephanie
CommentsHello friend! Hope you are doing well and having a great week. I've had a great week! The weather has been very nice here and Wyatt and I have really enjoyed it! What have you been up to? I hope you are feeling well and having a great day! Love your buddy, MJ - http://caringbridge.org/ny/mjpurk/
CommentsHey buddy! How have you been? Hopefully great! If not, feel better right away, okay? I have to go to hospital again soon. :-( So, if you don't hear from me, don't worry, I'll be back really soon!!!! Remember I love you and stay well! Huggles (haha a new word) MJ - www.caringbridge.com/ny/mjpurk
CommentsHi there! How are ya? Hopefully you are feeling GREAT today! Wyatt says he hopes you are having good weather! Stay strong and well! See you in DC. Take care!!! Love your buddy, MJ - http://www.our-sma-angels.com/Margaret/ www.caringbridge.org/ny/mjpurk NY hugs and hope www.hugsandhope.com
CommentsHello Kalair!!!!!!!!!!!!!! This is your friend Sofia!!!!!!!!!!!!!! Just saw your lovely pics on your webside.Mommy just gone off to send a nice parcel to you with lots of pics from me.I will get my new buggy soon,so I can get out again with mommy and daddy.We will go to the zoo with my friend Vincent.He is healthy and he can push me in my new buggy.I really looking forward to see all the ducks and donkeys.I really like ducks. By the way,I had my nrw g-tube fitted two weeks ago.That was really easy.Mommy stayed with me all the time,and after three hours we went home again.That was quite funny in that ambulance. I will tell you all about my visit in the zoo when i come back. Love to you and your family Your friend Sofia
CommentsWell sweet girl, I know I ought to post on your guest book more often so that new people who might come here will know that you are blessedly alive and well at 3years and 4+ months of age:o) I am so lucky to be part of your life! You make me happy EVERYDAY! I don't post more because I am busy living these wonderful, ordinary days with you. Days the doctors and statistics told us we would never have. Way to go Kalair! You show them honey! Through the Grace of God, Your amazing mommy, Dr. John Bach, The amino acid based diet, and all of our so very generous SMA family and friends, You are healthy and home with your mommy and have a real chance to continue to live a comfortable life until the cure for this terrible disease is found. You inspire me everyday Kalair. With your joy for life! Your bright enthusiasm, your song. Your perfection. Life is indeed sweet. For God has given us an angel to love. I am so grateful to God for these, never to be taken for granted, easy, ordinary days and nights! I ask that he guide my every thought and deed to help me grow better and better at being your grandmother. I love you so. My great big 3 year old granddaughter! Thank You, thank You God!
CommentsDear Liz & Kalair, We loved looking at your website, Kalair you are so beautiful. Hopefully one day we would love to be able to meet you both. Stay well and God Bless.
CommentsHi Kalair, Ta'Bria and I just wanted to say hello to such a princess. It is amazing how much you share my Ta'Bria's resembalance. You can visit her at our sma angels webby or www.tabriaswebspiration.homestead.com// It is amazing how blessed we are by these very courageous children. Ta'Bria is 8 and type 1 Smooches Celia & Ta'Bria
CommentsHi Kalair. Megan & I just wanted to stop by and send you hugs, love and prayers. We chat with your gramma sometimes, and you are sure lucky to have such a wonderful gramma. Here is my page (for whatever reason my big pic does not work but if you click on the photo links you can see me). It is so nice to see your beautiful smile. You are a beautiful little girl, and we will keep you and your family in our prayers! XO big hugs all the way from Canada Sept 2003
CommentsJust wanted to say hey to everyone who visits here since I never get around to writing on Kalair's site. Sorry, but I much prefer playing with Kalair! My beautiful princess was diagnosed with SMA at two months old and now she is three and a half years old, and doing well, praise God! This time three years ago we had just gotten a g-tube, started on the tolerex diet, started using a bipap, cough machine, feeding pump, suction and sat monitor daily. Talk about overwhelming!! But here we are today, and thrilled to be here. Kalair is a beautiful, healthy, spoiled, brilliant, witty, preschooler who happens to have very weak muscles. She loves life more than most people with ten times her physical strength. She is my inspiration, not only the reason I make myself get up in the morning, but the reason I am overjoyed to get up! I am SO blessed to have this angel on earth as my daughter. As you can tell I love to talk about Kalair, but I am not too good about updating the website. And Kalair may have children of her own before I get her whole "story" written, so any newly diagnosed families out there who are interested in what we do for Kalair, please email me! I am always happy to talk about my girl and answer questions. Without a few certain families (you know who you are!) we would not be where we are today, so we're always looking to do the same for other families. SMA sucks, but there is HOPE!!!
CommentsHi Kalair: How are you doing? Say hi to your mom and grandma. Sorry I haven't visited you in awhile. I was on vacation and I finally got my computer back (they had to fix it). I am back in school and working hard...I was home most of the week cuz I was sick. Hope you are doing ok. TTYL Love, MJ www.caringbridge.org/ny/mjpurk
CommentsHello, How are you today? How is your weekend going? I am home sick and Wyatt is keeping me company, snuggling in bed with me. If you check out my caringbridge website, you can see a picture of Wyatt and I snuggling in bed. Have a good day. Love, MJ www.caringbridge.org/ny/mjpurk http://www.our-sma-angels.com/Margaret/
CommentsHey! How are you doing? I'm still sick, UGH! Wyatt is very cuddly lately and loves to snuggle with me. I wish Wyatt could come and snuggle with you right now! Hope you are having a great day! Love MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/
CommentsJess and I really enjoyed the photos. I would love to talk with you.
CommentsHey Kalair! My name is Lindsey. Your mama signed my guestbook (Thanks a lot!). I hope you are doing okay. God bless you! You'll be in my prayers! Love always in Christ, Lindsey www.caringbridge.org/va/lindseynicole
CommentsIam stitching an angel for Kakair's quilt and every stitch is done with love. Doris
CommentsHi! How've you been? I'm finally am feeling better! I started some new medicines that really help! Wyatt is really sad today. My dad vacuumed the couch so Wyatt can't sit or lay on it. Oh well, guess he'll just have to snuggle with me! Hope you are doing and feeling GREAT! Love and hugs, MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/ Tell your mom and grandma we need a new picture of you from my clock!!!! Love ya!!
CommentsHi! How've you been? I'm finally am feeling better! I started some new medicines that really help! Wyatt is really sad today. My dad vacuumed the couch so Wyatt can't sit or lay on it. Oh well, guess he'll just have to snuggle with me! Hope you are doing and feeling GREAT! Love and hugs, MJ http://www.caringbridge.com/ny/mjpurk http://www.our-sma-angels.com/Margaret/ Tell your mom and grandma we need a new picture of you for my clock!!!! Love ya!!
Commentskalair, i am malia's cousin and i want you to know that you are one of the sweetest girls i have ever seen. i will see you soon;) Kimmie
CommentsHey Pooka, I came to say Hi and see your pretty pictures. I miss you little girl and love you very much. I'm sending you hugs and kissess baby, love you, aunt Stephanie
CommentsHey Kalair, Glad you had fun on your trip. You got to see Lily and Cole...how fun is that. Tell your mom and grandma hi from me. Hi! How are you? I still have a cold...:( Wyatt has been very good and cuddly! He actually has a new website! If you want check it out go to, www.freeweb.com/mj88 . He'll have a guest book soon so check back and let him know you have visited! Hugs to you, MJ & Wyatt www.caringbridge.org/ny/mjpurk www.our-sma-angels.com/Margaret
CommentsHI KALAIR.. Just surfing through your site again and was so GLAD to see your new pictures. You are getting so BIG. I loved seeing your new pictures especially you swimming. Hugs Sandy GMA to Saria Clark
CommentsKALAIR, HELLO LITTLE PRINCESS. IT IS YOUR NIGHT. IT IS HALLOWEEN SO GO OUT AND GET LOTS OF CANDY AND TREATS. YOU WILL BE THE MOST BEAUTIFUL PRINCESS OUT TONIGHT!!! YOU KNOW THAT MALIA IS WATCHING OVER YOU AND WISHING YOU COULD SHARE ALL THE TREATS YOU ARE GOING TO GET TONIGHT. SO GLAD THAT YOU ARE STILL DOING SO GOOD. I AM WRITING THIS TO YOU AS I LISTEN TO MALIA'S SONG. ONE DAY SOON I HOPE TO BE ABLE TO LISTEN TO YOUR SONG ALSO. KEEP WARM TONIGHT WHEN YOU GO OUT TRICK OR TREATING. HAVE LOTS AND LOTS OF FUN TONIGHT. HUGS AND KISSES FOR YOU FROM ME. LOVE, GRANDMA PAM
CommentsHi! How are you? How was your Halloween? Mine was pretty boring. We didn't have many trick-or-treaters here. Wyatt didn't enjoy Halloween very much...He barked and barked at everybody who came. Wyatt says I ruv yoou...That means I love you...I hope your doing well! Hugs, MJ & Wyatt http://www.caringbridge.com/ny/mjpurk
CommentsHello Beautiful Kalair, Liz and family. Your website is absolutely brilliant. Conor is looking at all the bright pictures at the moment. Kalair you are such a beautiful little girl and you give us hope and inspiration for our gorgeous Conors future. Conor is 5 months old tomorrow and very strong. His Bi-PAP and other equipment is due to be delivered tomorrow so we are all ready for action. Tomorrow starts a whole new chapter in our lives. I have sent you an e-mail enclosing a picture of Conor, You will agree that he is beautiful. I will keep in touch as I would be grateful if you could answer any questions that may arise in the care of our precious son. Thankyou Very Much All Our Love Julianne. Phil and Conor Conor xxxxxxxxxxxxxxx P.S Dr. Bach says that my mum, Julie and your mum Sallie are very much alike, He thinks that together they will educate the world in the way that every SMA angel should be treated! Please pass this e-mail address on to your mum, to get in touch with my mum.
Commentshello just like to say that your little girl kalair is beautiful i am conor durkin o.brien.s auntie and i just love him more than life it.s self i have two children of my own joshua is 5.7 years and macey is 1.3 years give kalair a big kiss from me and my children lots of love lindsey
Commentshi klair this is malias cousin kim. i love your pics. BYE BYE
CommentsHey angel girl, you are the best. I just wanted to say how grateful I am for every day with you, I love you so much. I cannot believe how big you are getting, you will be four years old before we know it! I am going to have to work out a LOT so I can keep carrying you around until the cure comes. I love you baby girl, I'm gonna come smother you with kisses now. Love, Mommy
CommentsI love you too Kalair! You make me happy every day. I am SO glad you are here! Love, Grandma
CommentsTHANK YOU LIZ for signing Saria's page. KALAIR Oh my how you have grown. It has been almost 2 years since we were first introduced to you and your mommy and in those 2 years you have grown so much, your mommy wont be able to hold you much longer!! Hope you guys have a great Christmas this year. And Kalair you have a computer, how great!! Tell your mommy I like her new hair cut. But she sure had to cut off a lot of hair!! Makes her look so grown up. I am so glad you have done so well and that you are doing so good Hugs Sandy Clark
CommentsHi Pooka I miss you sooooo much but I have a cold and can't see you right now. I just want to tell you Happy Holidays and that I love you!!!!
CommentsHi Kalair! Mom was showing me your website and all your cute pictures! I miss you and like your website and hopefully soon we can get together and play again!
CommentsI LOVE you Kalair! And I thank God that you are happy, healthy and safe at home with your mommy. Thank You God! Love, Grandma
CommentsThank you God for yet another wonderful night with Kalair safe,cozy, happy and healthy at home with her mommy. Amen I LOVE you Kalair. Grandma
CommentsMerry Christmas Kalair, what a big girl you are!! I love your pictures. Hugs from Saria's GMA
CommentsMerry Christmas everyone! Kalair and I are having a wonderful day. It's 2 pm and Kalair is napping after an eventful morning. Santa was good to her, and gifts included a STANDER, CD player, beautiful "princess" dress, clothes, movies, and lots more, pictures to come...Last night we went outside and sprinkled "Magic Reindeer Dust" (oats and glitter) so the reindeer would know to stop here and have something to eat. :-) Kalair had SO much fun with this! Mom and Dad were freezing but she laughed and directed where she wanted to sprinkle the stuff (mom helped). We had to sprinkle it in several different spots so the reindeer wouldn't fight. ;) Then we came inside and I realized we needed to leave milk and cookies for Santa but (duh!) we had no milk. So I mixed up some of Kalair's calcium supplement in water to make it white and brought the "milk" and cookies to Kalair to leave for Santa. Konsta, Kalair's dad, did not see me do this, so he's looking at the milk going, "what kind of milk is THAT?" It was too funny. But Kalair did not care, and after a short tantrum when she couldn't put off bedtime any longer, she was down for the night. She slept surprisingly well and woke up ready to open all those presents this morning. We are feeling extremely blessed on this, our princess's fourth christmas. And now this mommy's going to take a nap! Merry Christmas, Happy Chanukah, Happy Kwanzaa, Love and Prayers to all!! Liz, Konsta and Kalair (3.8 yrs w/SMA one)
CommentsHi there! Hope you had a great Christmas. I sure did. Santa even came and visited me and Mommy! Remember to ~~pray for the cure in 2004~~!! Big (((hugs))) www.our-sma-angels.com/Skylar
CommentsDear Kalair and family, We live in England and my little boy is 3 on April 28th 2004, He was diagnosed with SMA 1 aswell, and is doing really well, he has only been in hospital once, with mild chest infection and has no intervention at all. He is our miracle as I am sure you are to your Mum and Dad. You are very beautiful in your photos. Heres to a happy and healthy 2004. Best wishes, Sue Griffin, mum to Lloyd Griffin.
CommentsKalair, your getting so BIG! You no longer a little girl. And talk about beautiful, we need to have an SMA Pagent - you'd win! I miss talking with you and your mom (I love her haircut, I cut mine also) and promise to call soon! Take care sweet one, Love Kelly
Commentsi did like your pictures.but i want to share some information about the name kalair.my cost is kalair and i am from pakistan.i want to tell yoy that we have very big family. most of them use kalair as a last name.and they are living in all over the world.they are in canada,america eourpe,gulf,and are basically from dhaunkal,the richest village of pakistan.i need more information about this name.
CommentsHi! Sorry I haven't written in awhile, I've been sick and not feeling up to writing. It is so cold here. It snowed and snowed here today! Wyatt loved playing in the snow. He took his favorite toy (his tennis ball) out with him. He played and played for hours! Anyway, I hope you are doing well and it isn't too cold by you. Big hugs from me & Wyatt! Love MJ - http://www.our-sma-angels.com/Margaret/ http://www.caringbridge.com/ny/mjpurk "A life spent making mistakes is not only more honorable, but more useful than a life spent doing nothing." -George Bernard Shaw
Commentslooks like you had a wonderful xmas! you are a very special girl! i just love your eyes!! dad better watch out for those boys when ya get older! what a cutie!! you guys are doing wonderful with her! shes a very lucky girl to have such wonderful caring parents.. great job! stay in touch! we live in washington. take care and have a great day!
CommentsKalair looks great! She has such long hair. This is a great website the way you set it up and pray for Kalair all the time. I am an email friend of the grandmother Sallie Doesn't she look a bit like her grandma? I have only seen one pic of Salle a long time ago but that is what popped into my head when I saw the updated pics of Kalair. It sure looks like you take great care of her and give her all the love she needs. Bye, cat
CommentsHAPPY BIRTHDAY TO MY FAVORITE GIRL KALAIR!!! WE FIRST STARTED TALKING TO YOUR MOMMY WHEN YOU WERE JUST 7 MONTHS OLD AND NOW YOU ARE 4!! I AM SO PROUD OF YOU AND JUST LOVE YOU TO PIECES. SKY SEND BIG HUGS TO HER BESTEST FRIEND IN THE WORLD. HAVE A GREAT DAY! WE LOVE YOU K!!!
CommentsHAPPY BIRTHDAY TO MY FAVORITE GIRL KALAIR!!! WE FIRST STARTED TALKING TO YOUR MOMMY WHEN YOU WERE JUST 7 MONTHS OLD AND NOW YOU ARE 4!! I AM SO PROUD OF YOU AND JUST LOVE YOU TO PIECES. SKY SEND BIG HUGS TO HER BESTEST FRIEND IN THE WORLD. HAVE A GREAT DAY! WE LOVE YOU K!!!
CommentsI just wanted to be one of the first to wish you a very happy 4th birthday dear Kalair. I love you so much and I am so grateful to be celebrating your 4th!!!! birthday with you. Lots of love, Grandma
CommentsHAPPY BIRTHDAY Ms. Kalair!! You are growing up so quick. We are all so proud of you. Have a wonderful birthday and we will see you in a couple of weeks! Love ya- The Lockwoods
CommentsHappy Birthday sweet girl! I hope you had an awesome day!!!
CommentsHey Kalair! I just wanted to wish you a very Happy 4th Birthday! I love you and miss you! I hope you had a wonderful party on Saturday and I want to hear all about it!!!! Mommy said to tell you she loves you and your mommy too!!!!
CommentsHAPPY BIRTHDAY,Kalair, from all the Dutzy tribe,with a lot of xxxxxx's & oooooo's.
CommentsHappy Birthday Kalair Hope you had a great day on your birthday. Sorry we didnt E mail yesterday. We are in Florida and it was storming so we didnt use the computer. We enjoyed your pictures. you are growing to such a beautiful girl. I see a resemblance to your Grandpa Jim. I hope we can come out a visit you one day. We love you very much Love Nana and GrandpaPatr
CommentsHappy Birthday Kalair Hope you had a great day on your birthday. Sorry we didnt E mail yesterday. We are in Florida and it was storming so we didnt use the computer. We enjoyed your pictures. you are growing to such a beautiful girl. I see a resemblance to your Grandpa Jim. I hope we can come out a visit you one day. We love you very much Love Nana and GrandpaPatr
CommentsWonderful website! So colorful it makes me smile! It's so wonderful to see happiness and playfulness through a child's eyes. Aloha, Ava & Mommy :D
CommentsHi! Happy Leap year!! Its hard to believe its almost March. I've still been home sick, no school for me. :( I have been doing homework but not much (shame on me). Wyatt sends you big slobbery dog kisses from NY. Hope you're doing well! Love, MJ http://www.our-sma-angels.com/Margaret/ http://www.caringbridge.com/ny/mjpurk/ MJ "Just living isn't enough," said the butterfly, "One must have freedom, sunshine and a little flower." -Hans Christian Anderson
CommentsHi Kalair, We love all of your pictures and seeing that beautiful face!!! And of course we love you too!!! Aubrey sends you hugs and kisses. Tell your mommy we said hi! Emily
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CommentsI Love you
CommentsHey Kalair, I am at your house, this is fun...I love you.
CommentsKALAIR, I JUST LOVE VISITING YOUR SITE. YOU ARE SUCH A BEAUTIFUL GIRL. WISH I COULD HOLD YOU. ONE DAY STEPHI AND I WILL COME DOWN AND VISIT YOU AND YOUR MOM. HOPE YOU ARE FEELING GREAT AND DOING GOOD. TAKE GOOD CARE OF YOURSELF AND YOUR MOM. SENDING LOVE AND KISSES YOUR WAY. LOVE, GRANDMA PAM
CommentsGod Bless to Kalair and her family. I have recently lost a niece in September to this disease. Her name was Ilikea Kamakahukilani which means the fair skinned hawaiian whose eyes pulled heaven. Her name had suited her so well. My little angel was called to heaven. She is missed everyday. She has a website as well http://www.geocities.com/baba_bear2003 God Bless....... :)
CommentsHey Pooka, I just came by to see all of your pretty pictures again. I haven't talked to you in awhile, but I know that you are doing great. Thank you for signing Malia's guestbook on her birthday, I know she got all of you smoochies... I miss you baby, and your mommy too. I have a new phone number and address now, it is 816-931-6731. Make sure you give me a call soon. I love you precious princess. Aunt Stephanie
CommentsHey ladies, Remember me??? I don't blame you if you don't :o). Kalair is getting SO big!!! This summer I should finally get to come back home and see for myself. Anyway, I just wanted to send my love to everyone and let you know I haven't forgotten you. Love, Miah
CommentsI can't believe how big Kalair has gotten since last I saw her. She is gorgeous and doing so many fantastic things--the computer is wonderful!! Thanks for letting me share Kalair's life through your great website.
CommentsHi Kalair, just saw your picture on your site,God,,are you gone a big girl!!!!!!You are looking very well and very bautiful.Sofia is doing very well,getting bigger and cheeky every day.It's been four years now since Sofia's brother Samuel went to heaven.exact on the 22nd.It was a awful day again.We are glad to see you so happy and joyful.Big Hugs and kisses from your friend Sofia..
CommentsHello i've got a girl about tha same age any tips how to communicate with them??
CommentsWe are so blessed to have you with us dearest Kalair. I treasure every minute with you. I will never take a moment for granted. You make me happy every day. Kiss, kiss, kiss! Love, Grandma
CommentsHAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY TO YOU, HAPPY BIRTHDAY DEAR MOMMY, HAPPY BIRTHDAY TO YOU!!! My mommy said today was her best birthday ever because it was her fifth birthday with ME. We had a great day and I loved giving mommy her present and lots of birthday smooches all day long. Now we have to hurry and pack all our stuff to leave in 36 hours for our latest vacation...Greenville, South Carolina! We can't WAIT to see all of our good friends, especially Skylar, Skyler, Lily, Hannah and Madison. Well I have to go cough now, I just wanted to wish my mommy a very happy birthday and tell everyone what a fun day we had together. I love you, mommy. Hugs and kisses, Kalair Mariana Myrick (4 1/2 years old in six more days!!!)
CommentsWhere there is great love, there are always miracles. I love you, Kalair Mariana!!
CommentsKalair, hey big girl, I can't believe how big you are!!! I miss you very much and hope you and your mommy are doing well. I've thought about you a lot today and just wanted to tell you I love you very much... I'm sending you a big hug and kiss baby, I love you.
CommentsKalair, hey big girl, I can't believe how big you are!!! I miss you very much and hope you and your mommy are doing well. I've thought about you a lot today and just wanted to tell you I love you very much... I'm sending you a big hug and kiss baby, I love you.
Commentsbonjour je m appelle nathalie je suis la maman d un petit garcon matthias age de 5 nathalie a tres bians atteind de sma 1 bis il et tracheotomise et porte un corset je ne comprend pas pourqupoi votre fille n en porte pas votre site est splendide felicitation j espere que vous pourrais me lire amitie
CommentsI have loved thee with an everlasting Love Jeremiah 31:3
CommentsWhat a beautiful website, such gorgeous photos!! Karen.
CommentsHey pooka, I was thinking of you and thought I would let you know how much I love and miss you. I'm glad you are doing so well. I know you are keeping your mommy and daddy on their toes. I miss you little { I mean BIG!!!} princess. I love you, Aunt Stephanie
CommentsHELLO KALAIR!! I JUST WANTED TO TELL YOU THAT YOU HAVE A VERY SPECIAL MOMMY THAT HAS HELPED ANOTHER BEAUTIFUL ANGEL LIKE YOU. YOUR MOM WORKED HARD TO HELP ELIZABETH WITH HER NEW DIET.GIVE HER A HUG FOR ME AND TELL HER SHE IS A GREAT PERSON!! ELIZABETH IS DOING JUST GREAT.SHE DID TRY TO EAT SOME FROSTING TODAY AND IT CAUSED A FEW SECRETIONS BUT IT WAS HER FAMILY BIRTHDAY PARTY WITH HER COUSIN ROBBIE SO IT WAS OKAY.WE WERE SUPPOSE TO BE IN CALIFORNIA FOR ELIZABETH'S BIRTHDAY BUT SHE WAS SICK SO WE DID NOT GO.THAT WAS THE SEPT 29TH SO SHE GOT TO CELEBRATE IT TWICE!! WE DO LEAVE FOR CALIFORNIA THIS THURSDAY.WE REALLY CAN NOT WAIT BECAUSE IT HAS GOTTEN VERY CHILLY HERE IN IL.
CommentsHey pooka, I have big news for you!! Aunt Stephanie is having a baby!!! I hope you are excited about that. The baby will be here around the first of June 2005. I am very happy and can't wait to tell everyone but I wanted to tell you and your mommy first, I love you and email me soon, love aunt Stephanie
CommentsYou're my life's one Miracle, Everything I've done that's good And you break my heart with tenderness, And I confess it's true I never knew a love like this till you.... You're the reason I was born Now I finally know for sure And I'm overwhelmed with happiness So blessed to hold you close The one that I love most With all the future has so much for you in store Who could ever love you more? The nearest thing to heaven, You're my angel from above Only God creates such perfect love When you smile at me, I cry And to save your life I'll die With a romance that is pure heart, You are my dearest part Whatever it requires, I live for your desires Forget my own, your needs will come before Who could ever love you more? Well there is nothing you could ever do, To make me stop, loving you And every breath I take, Is always for your sake You sleep inside my dreams and know for sure Who could ever love you more?
CommentsHey pooka, I just wanted to stop by and say hi to you. I hope you are feeling alright today. I miss you, and I love you, Aunt Stephanie
CommentsI see trees of green... red roses too I see 'em bloom... for me and for you And I think to myself... what a wonderful world. I see skies of blue... and clouds of white Bright blessed days.... warm sacred nights And I think to myself... what a wonderful world. The colors of a rainbow... so pretty in the sky Are also on the faces... of people going by I see friends shaking hands.....sayin'.. how do you do? They're really sayin'... I love you. I hear babies cry... I watch them grow They'll learn much more... than I'll never know And I think to myself... what a wonderful world. You make our world wonderful, amazing, better than I could have ever imagined...I love you, Princess Kalair Mariana Myrick! I am in awe every day that God has blessed me with such an amazing angel girl. I love you more than words baby. I'm coming to kiss you now! ;)
CommentsHey Pooka, I just wanted to say hi and ask you to say a prayer for me. I have to go into the hospital for a few days because of a kidney infection. So keep me in your thoughts, OK. I will be thinking of you, I love you, Aunt Stephanie
CommentsThis is a true story that occurred in 1994 and was told by Lloyd Glenn. ************ Throughout our lives we are blessed with spiritual experiences, some of which are very sacred and confidential, and others, although sacred, are meant to be shared. Last summer my family had a spiritual experience that had a lasting and profound impact on us, one we feel must be shared. It's a message of love. It's a message of regaining perspective, and restoring proper balance and renewing priorities. In humility. I pray that I might, in relating this story, give you a gift my little son, Brian gave our family one summer day last year. On July 22nd I was in route to Washington DC for a business trip. It was all so very ordinary, until we landed in Denver for a plane change. As I collected my belongings from the overhead bin, an announcement was made for Mr. Lloyd Glenn to see the United Customer Service Representative immediately. I thought nothing of it until I reached the door to leave the plane and I heard a gentleman asking every male if they were Mr. Glenn. At this point I knew something was wrong and my heart sunk. When I got off the plane a solemn-faced young man came toward me and said, "Mr. Glenn there is an emergency at your home. I do not know what the emergency is, or who is involved, but I will take you to the phone so you can call the hospital. My heart was now pounding, but the will to be calm took over. Woodenly, I followed this stranger to the distant telephone where I called the number he gave me for the Mission Hospital. My call was put through to the trauma center where I learned that my three-year-old son had been trapped underneath the automatic garage door for several minutes, and that when my wife had found him he was dead. CPR had been performed by a neighbor, who is a doctor, and the paramedics had continued the treatment as Brian was transported to the hospital. By the time of my call, Brian was revived and they believed he would live, but they did not know how much damage had been done to his brain, nor to his heart. They explained that the door had completely closed on his little sternum right over his heart. He had been severely crushed. After speaking with the medical staff, my wife sounded worried but not hysterical, and I took comfort in her calmness. The return flight seemed to last forever, but finally I arrived at the hospital six hours after the garage door had come down. When I walked into the intensive care unit, nothing could have prepared me to see my little son laying so still on a great big bed with tubes and monitors everywhere. He was on a respirator. I glanced at my wife who stood and tried to give me a reassuring smile. It all seemed like a terrible dream. I was filled in with the details and given a guarded prognosis. Brian was going to live, and the preliminary tests indicated that his heart was ok-two miracles, in and of themselves. But only time would tell if his brain received any damage. Throughout the seemingly endless hours, my wife was calm. She felt that Brian would eventually be all right. I hung on to her words and faith like a lifeline. All that night and the next day Brian remained unconscious. It seemed like forever since I had left for my business trip the day before. Finally at two o'clock that afternoon, our son regained consciousness and sat up uttering the most beautiful words I have ever heard spoken, He said, "Daddy hold me," and he reached for me with his little arms. By the next day he was pronounced as having no neurological or physical deficits, and the story of his miraculous survival spread throughout the hospital. You cannot imagine our gratitude and joy. As we took Brian home we felt a unique reverence for the life and love Of our Heavenly Father that comes to those who brush death so closely. In the days that followed there was a special spirit about our home. Our two older children were much closer to their little brother. My wife and I were much closer to each other, and all of us were very close as a whole family. Life took on a less stressful pace. Perspective seemed to be more focused, and balance much easier to gain and maintain. We felt deeply blessed. Our gratitude was truly profound. [The story is not over] (smile) Almost a month later to the day of the accident, Brian awoke from his afternoon nap and said, "Sit down mommy. I have something to tell you." At this time in his life, Brian usually spoke in small phrases, so to say a large sentence surprised my wife. She sat down with him on his bed and he began his sacred and remarkable story. "Do you remember when I got stuck under the garage door? Well it was so heavy and it hurt really bad. I called to you, but you couldn't hear me. I started to cry, but then it hurt too bad. And then the "birdies" came "The birdies?" my wife asked puzzled. "Yes," he replied. "The birdies" made a whooshing sound and flew into the garage. They took care of me." "They did?" "Yes, he said." "One of the birdies" came and got you. She came to tell you I got stuck under the door." A sweet reverent feeling filled the room. The spirit was so strong and yet lighter than air. My wife realized that a three-year-old had no concept of death and spirits, so he was referring to the beings who came to him from beyond as "birdies" because they were up in the air like birds that fly. "What did the birdies look like?" she asked. Brian answered. "They were so beautiful. They were dressed in white all white. Some of them had green and white. But some of them had on just white." "Did they say anything?" "Yes" he answered. They told me the baby would be all right." "The baby?" my wife asked confused. And Brian answered. "The baby laying on the garage floor." He went on, "You came out and opened the garage door and ran to the baby. You told the baby to stay and not leave." My wife nearly collapsed upon hearing this, for she had indeed gone and knelt beside Brian's body and seeing his crushed chest and unrecognizable features, knowing he was already dead, she looked up around her and whispered, "Don't leave us Brian, please stay if you can. As she listened to Brian telling her the words she had spoken, she realized that the spirit had left his body and was looking down from above on this little lifeless form. "Then what happened?" she asked. "We went on a trip." he said, "far, far away.." He grew agitated trying to say the things he didn't seem to have the words for. My wife tried to calm and comfort him, and let him know it would be okay. He struggled with wanting to tell something that obviously was very important to him, but finding the words was difficult. "We flew so fast up in the air." "They're so pretty Mommy." he added. "And there is lots and lots of "birdies". My wife was stunned. Into her mind the sweet comforting spirit enveloped her more soundly, but with an urgency she had never before known. Brian went on to tell her that the 'birdies' had told him that he had to come back and tell everyone about the "birdies". He said they brought him back to the house and that a big fire truck, and an ambulance were there. A man was bringing the baby out on a white bed and he tried to tell the man the baby would be okay, but the man couldn't hear him. He said, "birdies told him he had to go with the ambulance, but they would be near him. He said, they were so pretty and so peaceful, and he didn't want to come back. And then the bright light came. He said that the light was so bright and so warm, and he loved the bright light so much. Someone was in the bright light and put their arms around him, and told him, "I love you but you have to go back. You have to play baseball, and tell everyone about the birdies." Then the person in the bright light kissed him and waved bye-bye. Then whoosh, the big sound came and they went into the clouds." The story went on for an hour. He taught us that "birdies" were always with us, but we don't see them because we look with our eyes and we don't hear them because we listen with our ears. But they are always there, you can only see them in here (he put his hand over his heart). They whisper the things to help us to do what is right because they love us so much. Brian continued, stating, "I have a plan, Mommy. You have a plan. Daddy has a plan. Everyone has a plan. We must all live our plan and keep our promises. The "birdies help us to do that cause they love us so much." In the weeks that followed, he often came to us and told all, or part of it again and again. Always the story remained the same. The details were never changed or out of order. A few times he added further bits of information and clarified the message he had already delivered. It never ceased to amaze us how he could tell such detail and speak beyond his ability when he spoke of his "birdies." Everywhere he went, he told strangers about the "birdies". Surprisingly, no one ever looked at him strangely when he did this. Rather, they always get a softened look on their face and smiled. Needless to say, we have not been the same ever since that day, and I pray we never will be.
CommentsHI sweet Kalair... You are so very precious , to your family and your friends, AND TO YOUR FRIENDS IN SMA who have never met you ..You are such an inspiration to our family, You are DESTINED to beat the odds!! Liz you are an inspiration to me, to |