On February 27, 2010, my beautiful baby girl, turned one years old. I cannot tell you how important this day was for us. After receiving Sophia's Diagnosis almost 10 months ago, we were told that our perfect baby would probably not make it to 6 months let alone a year. Of course we did not accept that fate, we decided to fight for her right to live!!!! She brings us so much joy, with her smiles and giggles. I love the way she loves me, I love how I can make everything better by holding her hand and rubbing her head. I love the way her face lights up whenever Vinny walks into the room. I love how she trusts us unconditionally. I love all the silly games we play everyday with her to make her smile, I love putting her to sleep everynight and knowing she wont fully fall asleep unless I am holding her hand. I love waking up and being the first face she sees....I love how every saturday morning we all snuggle in the bed together and watch elmo, I love how she has touched so  many lives without ever meeting these people, You are my everything, my inspiration, my heart and soul, I am so proud to be called your mommy!!!!! I thank God for you everyday, my Sophia,

Love always your mommy

What a wonderful surprise we received the other day in the mail.....Sewanhaka Central High School District heard about what Sophia's Cure was doing to help fund SMA research for a cure and organized a bake sale to support, enclosed with the beautiful letter was a check for $510 made out to Sophia's Cure Foundation. Thank you so much Sewanhaka, in joining in our fight against SMA.

As of February 11. 2010 Sophia's Cure Foundation is a nonprofit 501(c)(3) public charity. We are so excited to have reached this achievment. We are currently working on updating the website, and launching our Campaign SMA KIDS. Our idea is that every child in this community should have a face. We know how empowered we felt with our restricted funds and we want to extend that to each and everyone one of you. Every child will be able to set up a gift registry account with us with their own page for their child and determine where your hard earned fundraising dollars go. Whether it is Gene Therapy, Motor Neurons,other programs, any research you want to fund we are giving you that power. It is your money and your decision. Everyone who has a cause on facebook will get a donation button for their cause that will get donated to your childs gift registry page on SMAKIDS.com. After all it is your friends and family who are raising the funds for your child. When the funds are donated to the SMA Research of your choice, they will also be donated in honor of your child. We have so many more announcements coming your way.......

Victoria Strong a beautiful SMA mom to the lovely Gwendolyn Strong has been nominated by Care2 as a Hero Next Door, we are so proud to  know and call Victoria our friend, this honor is definately well deserved, The Strongs are fighting with us all to help end this disease!!! We are asking all our friends and family to go here and vote, the prize is $5,000 which will go towards SMA research!!!!www.care2.com/hero-next-door/662/description.

My beautiful Baby girl turned 11 months today. Against all odds and her diagnosis she is thriving and is such a happy baby. She smiles everyday and continues to fight fight fight. What sustains her is a steady diet of Love. We will continue to fill her with love every second of every day.

Thank you everyone for your support of the Gwendolyn Strong Foundation we were able to achieve the impossible. A foundation run by 2 parents in their home was able to compete against the largest organizations in this country and take 6th place out of over 500,000 charities. Oh I almost forgot WITHOUT spending a dime on marketing. The other organizations we were competing against spent thousands marketing their campaign. We as a community had something they could not buy, PASSION. Thank you for your support GSF won 100k as their prize and plenty of exposure and awareness.

I want to thank Mempham High School whose students did a walk for Sophias Cure and raised over $9,000.00. Molloy College just completed a fundraiser that raised over $2,800.00, thank you so much all of this money will go a long way towards research.

We have 2 upcoming events and 2 more are in the works! Our first event is being run by the incredible students at Kennedy High School. The Fundraiser will be held March 20th at Kennedy High School in Merrick. I will be updating everyone as the event draws nearer. The second event is a Benefit Concert being thrown at Suny Cortland. The event will be on Sunday April 11th from 6-11 pm at the Corey Union Function room. So far there are three bands playing.

If you have an idea for a fundraiser in your area please feel free to contact me.

Thank you everyone for your continued support! Thank you for taking part in a Miracle!

We received a letter on SophiasCure from a 9 year old girl who read Sophia's Story and was instantly touched by it, I have to tell you this letter made me cry, it amazes me how this 9 year old girl became so determined to help my baby girl....She is simply amazing....here is her letter..

Dear Vincent and Catherine, I'm writing to you on 12/28/09.I found out about Sophia's cure when me and my stepdad were at a pizza place.I almosted cried!I just wanted to say,I've been tring to let EVEYBODY know as much as I(a 3rd grader.)know about SMA and Sophia's cure.I MAY have a sale for something.(I do not know.)But,if I do,I will make fliers about Soaphia's cure.I will give them as bonus.By the way,I think Sophia is ADORIBILE I wish she was mine!:)So,I'm happy and sad for you.Happy because (again.) she is adoribile.Sad because she has SMA.Though,if you email something to my mom for me,(a task.)I'll try to do it.Meaning,if you ask me to do something I'll do my best to do it.At my grandma's,we have a bank that holds $10 and when we opened it we (me, my sister and cousins.) each got $2.50,I'm going to give it to my stepdad to give to...YOU!!:)But I SWARE I will do ANYTHING for Sophia's cure.If we find a cure,I hope Sophia can pick her head up and all the rest of the stuff she(or anyone.) can't do wit h SMA.I will come up with more ideas and send them to you.Wow,I've writen so much.That's how much I care about Sophia,you and the cure for SMA. From, Julia

Our computer crashed on us so Im sorry I havent updated in a while, Sophia is doing so well these last few weeks, we had an amazing Christmas though we were by ourselves (the three musketeers) we enjoyed every bit of it, I loved watching my baby girls face light up as I opened her gifts and showed her, sometimes she was more interested in the bow than the gift. She is the light in our lives and I will never forget this Christmas, my Sophia's first Christmas.....

We also were so lucky to have Summer from Summerlynphotography come over last monday to take more photos of Sophia, she is so amazing and talented and so generous to do this for us, she really gives us the best gift we could ever ask for, the photos she captures are incredible and just priceless to us, I can never repay her generousity for all the shoots she has done for us, she is simply an amazing woman and photographer and friend, We are so lucky to have her in our lives, so please take a look at a few moments she captured last week ...

We are staying positive and hopeful for 2010, that Sophia will stay with us, that we will cure her, and end SMA for all the children affected out there!!!!!!

I have been feeling a little down lately, not sure if it has to do with Sophia turning gray before my eyes and de-sating the last few days, I guess it probably does....The reality is the disease is progressing and I cant do anything about it and it breaks my heart...I would give up anything to cure her and i hate that I cant control this...I remember last christmas I was about 8 months pregnant with Sophia and I sat in our living room and kept thinking that this Christmas my little girl would be crawling around the tree...Dont get me wrong I am so grateful Sophia is with me and her smile brings me everlasting joy ...but sometimes I get down about the simple things she cannot do...I thank God for everyday she is with us, and pray for a cure soon, I just want everyone to not let the simple things bother them and to realize how lucky they are to have a happy and healthy family, please dont ever take that for granted, everyday i am making memories with my Sophia and storing them deep in my heart, not knowing if and when it will be our last....Please this Holiday season pray for a cure for this disease, I know that is all I want...

Saturday night was very scary for us...Sophia had an awful plug and her oxygen saturations dropped as well as her heartrate, Vinny and I worked on her for an hour and were able to bring her back up, not sure if its teething or the RSV shot she got that day, or just this awful disease.....Sunday we kept Bi-Pap on for most of the day to be safe and Vinny went out to go get Sophia's first christmas tree, when Vinny brought it in the house she was very interested in this new thing in her living room...we brought her close to it so she could watch everything...Vinny and I wrapped the lights around and I had Sophia touch the bulp at the same time Vinny plugged them in so they all lit up, she was so excited to see all the lights....Then we brought out all our special ornaments and let her see them and touch them before we put them on the tree, she loved watching how the tree transformed before her eyes, It was such a special night I will never forget..

We had a wonderful Thanksgiving this year, I know it sounds silly but I just love the Holiday season, and I have been waiting my whole life to have a babies to share it with, My mother was a wonderful woman, the best mom in the world, and she always went above and beyond to make the Holidays special for me and my brothers, and since her death in 2003 the Holidays have been a little sad for me, but with the birth of my Sophia she has brought my spirit back, and I had the best time cooking and dressing her up, we all watched the parade and I loved seeing her face light up when the sesame street float came on the screen, with Elmo and Abby singing and dancing, then Daddy did a great puppet show with Elmo and Abby, and her smile and giggles were priceless....After dinner we took Sophia for a walk down the block in her Red Rider Wagon and she loved looking around at all the trees and kids playing football in the street....I will never forget her first Thanksgiving and just always praying we will have many, many, MANY more to share....

Everyone this is it! This is what we have been funding. He has made it to Esquire! We have played a huge part in speeding up this trial. Every dollar we have raised has been going to this trial. The more we raise the faster it starts. Thank you for your continued support. Hopefully very soon we can start saving babies!EsquireMagazineArticle

The Cure SMA New York Gala was a huge success!!! Not only did we receive a surprise check from OdysseyRe for $50,000 but more importantly we brought together so many SMA families for a fun filled night. I am so proud of Kiley and Dylans sweet dreams foundation and Sophias Cure for pulling off such an amazing event. We were so honored that Rania Nasis came all the way from UC Irvine to speak about the Stem Cell program they are developing for SMA, and even more proud of my dear friend Dorothy Shuler for winning the Dora B. Martin Courage award, she is such an inspiration to me and my family and to so many in the SMA community, Her strength is incomparable and her courage is immeasurable!!!! More than raising money what we wanted people to walk away with is Hope.....Hope that the cure IS around the corner, Hope that SMA wont be a death sentence anymore, and Hope that all the children affected will BE cured and all the children who have passed have not died in vain!!!!! I get up everyday because I have that hope, i hold on to it with all my strength, and when the day seems dark I need it even more.....and I hope if nothing else the families were able to walk away with hope for a better tomorrow.

A few weeks ago we took Sophia to the pumpkin patch, we had fun, but we were very nervous, she was not feeling 100% that day but I think she had fun looking at the pumpkins!!!!! Also after she had a nice bath and we wrapped her in her favorite Elmo towel!!!!!

Mommy covering the sun :)

wearing tights for the first time:)

I really want to take this time to thank all of our friends and family who have been so understanding about us keeping Sophia Quarantined.....it is so hard for us not to want to bring Sophia out and show her off and pass her around for everyone to Love and Hold, but unfortunately this is not meant to be...at least for now, it is so important for us to keep Sophia Healthy!!!!!!I know everyone knows this but I also want everyone to know I know it is hard on you also ....... Sophia has 4 Aunts Terry, Suzanne, Melissa and Joanne who she has only seen maybe once or twice, She has three Uncles Ed and Mike and Chris and she has 2 Grandpas and two Grandmas, I show her pictures often and speak about all the family that love her so very much and pray for her everyday, So thank you all for being understanding and I pray everyday that we will all be laughing together soon with my beautiful Sophia!!!!!!!!

Barbara Gay a teacher at Mepham High School has organized a walk for this friday October 16 to raise money for Sophia's Cure, 300 students have signed up to walk for Sophia's Cure....My heart is so touched by all the people young and old coming together in our community to support my daughter, Barbara informed my husband that all the students have been making posters and buttons and T-shirts. Some of the posters say "Sophia class of 2027" and they have been plastering them all over...students have been having discussions in class about SMA and how this rare disease tends to be overlooked. I am so proud of these amazing young people and the community we live in!!!! They are helping to keep our hope alive.. 

Yesterday was Vinnys Birthday and we had such a nice time, Sophia took her "Happy Birthday pics" for her daddy and had fun dressing up, when vinny came home from work he opened up his cards and presents and we sang Happy Birthday....

Today the wind was blowing everywhere and all the leaves are starting to fall so since Sophia is feeling better we went outside on the deck and she had so much fun watching the trees blow and all the leaves swirling around....

Sophia had a plug on monday and again yesterday, we took her to the pulmonologist on tuesday and they said her throat was red, and may have a virus.....she has no fever and a chest xray showed her lungs are clear.....but she has to stay on bi-pap for most of the day now till she is better....she is still very smiley so I am hoping this isnt too bad, we have her antibiotics just to make sure it doesnt turn into anything else....I hate seeing her like this and hope she starts feeling better soon.....so no pumpkin patch this weekend hopefully next weekend...

Sophia just learned this game and LOVES it, we usually put the bib or a burp cloth over her face and say "wheres Sophia?" and then quickly pull it away and shout "PEEKABOO" she then lets out the cutest giggles, it makes me want to do it forever just to keep hearing those little giggles!!! She really shows you that the simple small games is what she loves the most, like when Vinny and I kiss her belly, this always makes her giggle...........I try to concentrate on these little things that she loves because it is so agonizing to me that I cannot hold her. The most time she will spend in my arms is when I am transporting her to one room or another and it has to be quick or she will start choking on her saliva. To get through this time I think of new ways to be close with Sophia, like I will lay down facing her and "rub noses" and hold hands she still can squeeze my finger....I treasure every moment that I am close with her and hope maybe someday I will be able to hold her again, for now we have our PEEKABOO, and belly kisses!!!!

After a long wait Sophia finally got her AFO's, these will help keep her feet in line, alot of the time with SMA kids they get what is called the "ballerina feet" where there feet will point down. But now these will help keep her feet in line...they are very cute with butterflys and pink buckels... Sophia is doing well we are still enjoying our daily walks outside and I will be sad when winter kicks in and we wont be able to go anymore, Vinny and I are really hoping we can try to get through this first winter without Sophia getting sick, I know its alot to ask but we are just hoping, we are being very cautious and not letting anyone over and the therapist and nurses who do come over we are starting to ask them to wear masks, I also have ordered pediatric masks for Sophia to wear whenever we need to go out for a doctor appt. On a happier note I am looking forward to taking her to the pumpkin patch to pick out our pumpkins, we will probably be going within the next few weeks, so check back for cute pics :)

I cannot believe summer is ending....it went by so fast, with fall approaching I am so scared and worried for my little girl, we have been able to keep her healthy these past 6 months but not sure what the future holds for her and us. We are preparing to enter "Lock Down" mode, I know it has been very hard on some of our family to not be able to see her, and believe me I want to show her off to everyone but it is just so important to keep her healthy we just need to stick to our rules, everytime we even go near Scneiders Hospital Sophia becomes visibly upset and I will do anything to keep her out of the hospital... we wont be taking her out at all unless for Dr. appts and we will be very careful when we leave to wash up and change our clothes when we return home, sometimes the thought of everything you have to remember to keep her healthy is exhausting and frightning....Vinny will be returning to work shortly and I am thinking about how it will be with Sophia and I alone all day, sometimes I get very depressed thinking about all the things we cannot do together, I need to focus on the things we can do and try to stay positive..... We received an amazing gift in the mail from Bill and Victoria Strong , there daughter Gwendolyn has SMA type 1 as well www.gwendolynstrong.com it is a childrens book called "Thisbe's Promise" the story is about a little girl who because of illness is confined to her room and bed, and the bond between the mother and daughter reminds me of my Sophia and I, the story has touched my heart and I urge any mother with a child with disabilities to read this book, it has given me strength and courage to stay positive for my little love....

I cannot believe my little baby will be six months on thursday 8/27....I remember when we got the diagnosis and the doctor said that 50% of these babies do not live to be six months, I was dreading every day that past knowing that time was slipping away, but now I cherish everyday with her...everyday is a gift, everyday she teaches me something new, everyday she amazes me with her strength and determination....she is definately just like daddy....So on thursday we will be celebrating and toasting to our little girl beating the odds, and praying for a trillion more months together .......

We are going to Schneiders children's hospital today for Sophia's conversion from a g-tube to a gj Tube. The reason for this is because SMA babies can still aspirate on the contents of their stomaches. As our doctor put it "It could be a MORBID EVENT!" There has to be a better way of describing the risks involved than MORBID! Like high risk. Anyway we will be able to relax a lil bit after this surgery. Sophia's feedings will now bypass her stomache and be fed directly into her intestines. This will help reduce the risk of aspirations. We have not been able to pick Sophia up or hold her since the G-Tube Surgery and we are Looking forward to holding her and hugging her again. Please say your prayers today that all goes well. Thanks The Gaynors

Sophia had her feeding tube surgery this last tuesday, everything went very well....I was so proud of her, she is my little superstar. Vinny and I stayed with her 24/7 and never left her side....She was so proud and was smiling at all the nurses!!! Last night was our first night home, we were nervous at first but she seems to be tolerating her feeds well...we just need to be careful with her for the next 3 weeks until her g-tube is converted to J-tube....it is very hard because we cant really hold her, because she will start coughing and we dont want her to choke....even though she has the g-tube her belly is still very cute!!!!! We are still working very hard with fundraising to reach our goal and to get this clinical trial going!!!!!! Still fighting for Sophia !!!!!!!!!!

Sorry I havent updated in a while, Sophia keeps me very busy...We have had some great events lately....Vinnys cousins Beth and Brian and his Aunt Janet ran a wonderful karoke benefit for Sophia's Cure earlier this month, Vinny was able to attend and said the event was a hit!!!!!! I cannot thank them enough!!!! Also my cousing Christine along with some of her collegues through a Happy Hour Funraiser last week for Sophias Cure wich was a wonderful success!!!! Thank you to everyone for all there hard work!!!!! Sophia has been all smiles lately and loves watching her Elmo videos!!!! Later next week Sophia is going into surgery for her feeding tube, we are nervous but know that this will ultimately help her. Will update more after her surgery.

Sophia and Vinny and I all had an amazing day last tuesday, we met up with Summerlyn of  summerlynphotography to have a family photoshoot, Summer shot Sophia when she was just 7 days old and those pictures are just priceless, she is talented beyond her years and I am so lucky to have found her. After hearing about our Sophia Summer reached out to my family to donate her services to us, I can never thank her enough for the wonderful moments she captures that we can share forever!!!! Everyone please go to her site and just view the amazing pictures she has displayed!!!!!  Cannot wait for our next photo session :)!!!

Hi, My name is Catherine Gaynor and I am starting this Blog for my daughter Sophia, who has Spinal Muscular Atrophy. So far we have been so lucky to keep Sophia Healthy, she started using her Bi-Pap at night to help her breathing and she seems stronger during the day. I am still pumping so she is still able to have my breast milk which is also helping to keep her strong. I am hoping that all the fundraisers do well that we have set up so we can help get the clinical trial going asap!!!! Yesterday was Sophias 4 month birthday, I cannot believe I had my little girl four months ago, time is really flying, and she has gotten so big. As a celebration Vinny and I took Sophia out to the Long Island Vineyards and had a picnic!!! She loved being out of the house and so did we. Today we had an early start since we were on the show Fox and Friends, she loved it and looked so cute in her pretty dress that Aunt Terry bought for her. She was so good on camera and slept the whole way home. Since the show aired we have had a flood of donations, I cant believe it, so many generous people in this world!!!!!Thank you to everyone !!!!