Oh what a beautiful night

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 … [Read more...]

Wedding Time

A wonderful woman, Amber contacted us after reading about Sophia, she wanted to make a donation to Sophias Cure in lieu of having favors at her wedding, We gave her Sophias Cure bracelets and she placed them at all the seats of her guests and wrote something about our little angel and her struggles, we cannot thank Amber enough for opening up her heart to our angel, please take a look at the beautiful pics!!!! … [Read more...]

Pumpkins

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!!!!! … [Read more...]

A Thank You

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 … [Read more...]

Mepham High School………Sophia class of 2027

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 … [Read more...]

Vinnys Birthday…..Fall

Yesterday was Vinny's 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.... … [Read more...]

Sophia is sick

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 … [Read more...]

PeekABoo

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 … [Read more...]

Sophia got her AFO’s

After a long wait Sophia finally got her AFO's, these will help keep her feet in line, a lot 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 butterflies and pink buckles... 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 … [Read more...]

Summer is ending!!

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 … [Read more...]

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