Recently, the Hub, Charlie and I went to Special Needs day at a local church. We meandered around for awhile and as we were leaving, me eye was immediately drawn to a beautiful little girl who was “dancing” to the music. Later that night I found myself standing next to her family in the check out line at Walmart. I spoke briefly with her parents and I was introduced to Mary Payton. Her mother explained that she had been completely normal until she was three years old and at that time she had developed a degenerative brain disorder. I went home sad because degenerative and brain aren’t two words you ever want to hear in the same sentence.
Through twist of fate, I happen to learn that Mary Payton’s family has a website and when I visited it I found out some thing that I haven’t been able to shake. Apparently, Mary Payton’s condition is fatal. Right now, this beautiful little girl shouldn’t live past her twelfth birthday and before her death she’ll experience a breakdown of her central nervous system.
That’s not even the worst part.
A doctor at Cornell University has developed a protocol that has been proven to halt and in some cases even reverse the progression of this disease. Unfortunately, funds are scarce and she isn’t able to go on with her research. Mary Payton and four other children are desperately trying to raise money so that the study can continue. As you can imagine, the price tag for something like this is huge–two and a half million in total for five children and at least five-hundred thousand of it needs to be raised quickly and soon.
I often think that it’s hard raising a special needs kid. There are plenty of therapies that I’d like to try, but don’t have the money. I’m also shelling out the equivalent of college tuition trying the experimental therapies that I can afford.
But if I never did any of these therapies, Charlie would still live. His life is not at stake.
There’s a line on Mary Payton’s web site that’s just stuck in my head: “I will probably never have the kind of money I need now to save my child. “
I don’t know the ends I would go to to save my child’s life. I’m not sure I’m completely comfortable with the idea that someone’s life has a price tag on it. What I do know is that I’m giving them some money. I’ve got a disabled kid at home and I just started my own business, but this is more important.
We can all do something to help this child. You can donate, but there are other things too–spread the word. I would love to see Mary Payton’s name lighting up Twitter and Facebook. I’ve never been a big-name blogger and I’ve always been fine with that, but this is one of those times when I wish I had a little more reach. Still. . . things can be done. Tweet it. Put it in your status updates on Facebook. Send an e-mail to people you know.
Let’s see if we can’t help.