Michael Valletutti via Crowdrise
October 27, 2010
BENEFITING: UNITED MITOCHONDRIAL DISEASE FOUNDATION INC
EVENT DATE: Oct 27, 2010
Anthony suffers from regular seizures, lack of energy, and other characteristics of MELAS. He is in his second year at high school, loves playing XBOX and PlayStation games, very skilled on the computer and internet, plays his music loud, will watch a football game with you, and is an engaging personality. And he is a rock star at the mall - knows every kid, and every kid knows him.
UMDF.org is a foundation dedicated to the diagnosis, treatment, and cure of mitochondrial disorders. Anthony has had the benefit of a diagnosis, medication, a VNS implant, and countless visits to the ER. As he turns 17 next year, the challenge for kids like Anthony is the transition to adulthood and as much independent living as is within his abilities. With his weekly seizures, we've learned that it isn't the actual seizure that is a threat to him, but hitting his head or face during the fall. Fortunately, Anthony has somebody with him all the time, between two homes and at school, and by his two brothers when necessary.
I'm new to fundraising, but love the concept of social networking and the power of the internet. My goal for my first fundraiser is related to supporting Anthony as an adult with differing abilities. More children with disabilities are living longer, thanks to medicine, research, and education. The result is a growing population of kids like Anthony that will graduate from the school system, but require full-time support beyond 18.
Not all areas of the country have group homes close enough to family. My interest is in the design and build of a green, self-sustaining residence that was safe, provided a comfortable, semi-independent living, and was available to family and relatives.
My pledge is to match any donations into a fund for Anthony that will provide him some capital to finance plans for his desire for independent-assisted living. The deadline is Anthony's 18th birthday.