New Rootless Experience
Venue Address (Get Directions)Fundraiser For Kevin at Blue Port Junction
Date and Time
Sunday, June 3rd, 2012 at 2:00pm
This Sunday June 3rd there will be a Fundraiser for Kevin Kevin is 11 years old and was diagnosed with a very rare genetic disorder when he was 3 weeks old. So rare that we were told he was one in only 200 in the world at the time!! He has 3 extra X chromosmes, 49xxxxy syndrome. At the time of his diagnosis I was told that he would never walk, talk or feed himself. I needed to prepare myself to raise a child who would basically just lay there. Today, Kevin runs, jumps, does somersaults, and not only does he feed himself and eat like a champ, he loves to help cook!
Every year, there is a conference in Annapolis, MD for families of "49er" boys. There is also an opportunity to be evaluated by Dr. Carold Samango-Sprouse, the only doctor I know of that specializes in this rare disorder. The evaluation itself runs over $1000, and Kevin's insurance does not cover it. These evaluations are so important for these boys. Dr. Spouse has given us so much information, advice and treatment ideas. Had it not been for her and his very first evaluation with her, Kevin may not be doing as well as he is.
We made the decision as a family to go to the conference and eval every other year. It's quite a trip to Annapolis with a family of 6, and the trip becomes our vacation the years we go. Having 3 other children, we decided to go every other year so th eother children wouldn't grow up without experienceing a "typical" famiy vacation.
With the conference, evaluation, hotel and travel, our trips to Annapolis are quite costly. We are holding a benefit fundraiser to help off set some of the cost to make this trip. There will be live music, face painting, hair tinsels, silent auction, raffle drawings and a 50/50 raffle. There may be more entertainment lined up.
I hope you all can attend. This will be a kid friendly event. We are also in need of volunteers and donations for raffle prizes and silent auction. If you are able to help out in anyway, please email me at email@example.com or contact me here on facebook. Thank you all so much!