Who is Vinny?
Vinny is our boy. He is three years old and has an extremely rare neurological disorder called Canavan Disease (CD). CD is a genetic disorder where both parents have to carry the mutation and even then, the parents only have a 25% chance of having a child with CD. There have been only about 500 cases ever documented in the US. Since he does not have a specific gene, his body does not naturally create a critical enzyme and therefore acid builds up in the white matter of his brain, destroying his motor functions.
What is he like?
He is very much like a big infant, but smarter. Since his grey matter is not affected, his thinking ability is not diminished. But since his white matter is severely impacted, he cannot walk or speak or even hold up his own head. He can however reach out, communicate through noises and he smiles and laughs to let you know he is happy.
What is his future?
There is simply no cure for CD and he will likely not live much past 10 years old and could die sooner or could live longer. Unfortunately, he will continue to degenerate over time, he will likely lose much of his sight and will probably develop seizures. Ultimately, heart, lung or other critical functions fail.
What can be done?
We have largely come to terms with the reality of his future, so we focus on right now and what we can do to make his quality of life better. We look for ways to make his life more comfortable and to give him opportunity to do more than he is ‘supposed’ to be able to do. This is why we opted to try the gene therapy and while it did not make huge improvements, he is able to do more than he did and we likely have slowed the degeneration process. Stem cell research is really the best possible chance for these kids. Although I am not sure it will come in time for Vince, I think it holds real potential for families to not have to go through this in the future.
Where will the money go?
There are two main options, the Vincent’s Hope fund and the UMDNJ / Cooper Hospital fund for Paola Leone. The Vincent’s Hope fund is a checking account with Union Colony Bank in Windsor, CO that we use for any of our personal costs to support Vinny. Examples include hospital bills, copays, adaptive equipment, medically required travel…etc. We keep very careful records of every penny coming in and out and keep it very separate from our personal finances. With that said it is not an official charity and donations are generally NOT tax deductible. Paypal funds received as part of the auctions are deposited into this account. The UMDNJ / Cooper hospital fund is an official charity that funds research conducted by the only scientist in the world working on CD exclusively, Dr. Paola Leone. She is the one who coordinated the gene therapy and who is currently working on adult stem cell research. We make regular contributions to this fund from the VH fund and from our personal finances when we can. If someone is interested in making a more substantial contribution to be able to deduct from their taxes, this is the route to take. Finally, I don’t know what kind of sick freak it would take to use this as a scam, but I guess it is possible. There are dozens of ways I can prove this is legitimate and I am more than happy to do so if you have even the slightest concern. Please contact me via email kkbward1@comcast.net for questions or concerns. I am hoping to meet some of the local folks sometime soon and I extend an open invite to folks to drop by to meet Vinny and maybe toss back a beer and talk fishing for a bit….
For more info, click here
http://www.vincentshope.org/(warning: content is a little stale)
2 comments:
20.00
Candy at...
http://gnosticminx.blogspot.com/
Candyminx,
Hey, You win! I don't have your e-mail. But please send me your address (fgomez@randomhouse.com) so I can drop Eddy V.'s book in the mail to you.
Send FatPig your $20 when you get a chance, please.
Thanks for playing. Shutupandfish
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