Posts Tagged ‘ Sanfilippo Syndrome ’

If it were my daughter, I’d fight like hell too

Monday, April 7th, 2014

This morning a colleague forwarded me this video which I dare you to watch without a box of tissues. The first thing I thought was If it were my daughter, I’d do the same thing. I’d do whatever I could to raise this money.

Please, watch:

As her parents describe in the video, 4-year-old Eliza has Sanfilippo Syndrome. It’s a terminal genetic disease. It is degenerative and Eliza’s quality of life will continue to deteriorate as she gets older. She may seem like a normal fun-loving kid today, but she’ll only get worse to the point where she won’t be able to walk, talk, or feed herself and she’ll be in considerable pain. As a parent myself, I can’t think of a worse fate for a child than to lose all that she has gained … and on top of that, to be in pain. And to watch helplessly as a parent. The one hope for this family is a very promising clinical trial this fall that doesn’t have enough funding to continue. And of course if it can’t continue, Eliza can’t get the treatment which could very well save her life. I encourage you to read her story and if you can, also donate to the fund. For so many children with genetic diseases, there is no cure. For Eliza there may actually be one. And if she were my kid, I’d be fighting like hell to make sure she got it. Wouldn’t you?

 

 

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