Where have we been

I cannot believe it has been a few months since I have updated Our life with Sophia and SMA....well its all for a Great reason, On Agust 5th 2010 our son Jackson Vincent came into the world....we are absolutely in love, and so happy that Sophia has a little brother...Jackson is SMA free, which means he is not even a carrier for the disease.....and a part of me is happy he will never have to worry about this awful disease. Sophia NOW loves her little fiesty brother, at first I believe there was … [Read more...]

Wonderful things

Sophia’s Cure Foundation has had some wonderful fundraisers going on in the past months. We would like to thank all the families who have reached out to us wanting to support and who believe in our small organization. When Vinny and I first discussed starting a foundation in honor of Sophia, we knew the two most important things to us was funding research that was based on CURING SMA and helping SMA Families. Thank you to the following organizations and families for their generous … [Read more...]

Updates

As you can see we are currently updating our website, hopefully all will be finished shortly. Sophia has been doing well, we had sophia's birthday party on May 29 and all our family and friends came out to celebrate our little miracle, the day couldn't have been better, the weather was perfect and Sophia was so interested to meet all these new people. Thank you so much to the amazing Summerlyn of Summerlyn photography for coming out to take shots of everything. I cant wait to get all the pics. … [Read more...]

Sophia is going to be a Big Sister

We were very surprised to learn in December that we were expecting another baby. Today after an incredibly trying 8 weeks we found out our baby boy is healthy. We went through such a gauntlet of emotions. We certainly did not want to put another child through what Sophia goes through on a daily basis. At times I felt as if I was almost cheating on Sophia. I also cannot fathom loving another child as much as I love my daughter. I am truly so thankful, for this sma community. None of us want to … [Read more...]

Sophia 11 months

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 … [Read more...]

The Human Spirit

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 … [Read more...]

A new year

Our computer crashed on us so I'm sorry I haven't 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 girl's 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..... … [Read more...]

Holiday Season

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 can't do anything about it and it breaks my heart...I would give up anything to cure her and i hate that I can't 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 … [Read more...]

Christmas Tree

Saturday night was very scary for us...Sophia had an awful plug and her oxygen saturations dropped as well as her heart rate, 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 … [Read more...]

Giving Thanks

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 … [Read more...]

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