BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
ORGANIZER: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Mar 20, 2016
Thank you for visiting my fundraising page and for supporting the CdLS Foundation in celebration of my son Stelios, the amazing little boy who taught me the importance of focusing on what can be rather than on what can’t. I never thought I could run a marathon and for years, I had been helping the CdLS Foundation with their fundraising efforts by being a Phantom Runner—not this year! This year, I decided to join Team CdLS and run the NYC Half Marathon. On March 20, 2016, I will be running in celebration of Stelios and his CdLS friends and in memory of the CdLS angels that we lost this year.
My son Stelios was diagnosed with CdLS 9 years ago. Cornelia de Lange Syndrome (CdLS) is a little-known genetic condition. It causes a range of physical, cognitive and medical challenges. Individuals often struggle to perform everyday tasks that we take for granted, like walking, talking and eating. There is no cure. A day after he was born, the doctors broke the news to us that Stelios had CdLS. It was heartbreaking to hear that the beautiful little boy we brought into this world was going to have a life much different than we ever imagined. Doctors, books and different websites listed all the things Stelios wouldn't be able to do but year after year, he continues to prove everyone wrong. Stelios is an amazing little boy who is always smiling, no matter how difficult things are for him. Unlike children without CdLS, Stelios has to struggle and work harder to do even the simplest of tasks and most of the day-to-day things (that most of us take for granted) are a challenge for him. The little boy who we were told would probably never walk started walking on his own over a year ago and he has just been getting better and better at it. Stelios has recently taken to getting up on his own and walking around his school and our house without assistance. This is a huge accomplishment for my little boy. His personality has also changed and he is showing signs of being a typical stubborn little independent 9 year old! He is attending a school that specializes in special needs students and he just loves it there. The teachers and staff are amazing and do so much for him and help him do the many things doctors told us he wouldn’t be able to do. It is truly amazing how far he has come and we will continue to focus on what he can do rather than what he can not. Some CdLS families are not as fortunate as we are so please make a donation to help me and the CdLS Foundation change the lives of others.
I am so honored to be part of the Team CdLS team and running for such a great organization. With my biggest fan, Stelios, and his buddy Luca cheering me on while running with my new friend and fellow CdLS mom, Dena, I will complete the race and hopefully raise a significant amount of funds for the CdLS Foundation. Please help me in my fundraising efforts with a donation--any amount, big or small is appreciated by everyone at the CdLS Foundation and by all the CdLS families. Donating through this website is simple, fast and totally secure. It is also the most efficient way to support my fundraising efforts.
Thank you for being a part of this fundraising experience. Your support means a lot, not just to me, but to the children with CdLS and their families. I can not thank you enough for all of your support!
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