MDA Gives Hope
But for many others, it holds hope. This year's Muscular Dystrophy Association telethon will finally be the year the proceeds provide a cure. More than 1 million Americans are affected by neuromuscular diseases. About 250,000 have some form of muscular dystrophy.
Ellie Stitzer is one of the amazing kids living life despite challenges.
"This is Kid. This is a really old horse. He's a very calm horse, he eats a lot," said Stitzer about a horse she has come to love at MDA camp.
"(She) Loves horses, loves any kind of animal. She wants to be a vet when she grows up," said Stitzer's mother, Dietlande Stitzer.
Ten year-old Stitzer has spinal muscular atrophy type 2. It was apparent when she was a baby and there isn't a cure yet. Over time, it's harder and harder for Stitzer's muscles to communciate with her spine. She had sugergy last year to help correct the curving of her spine.
"They had to put metal rods in my back to help straighten it," said Stitzer.
Despite all she has been through, Stitzer is a delight to talk to and spend time with.
"She's very laid back, very happy. She doesn't complain about anything, even with the surgery. Not one time did she complain and say why did I have to have this. She just said, I have to do this, lets do it and get it over with. She inspires me and her father and just lifts us up," said Dietlande.
Besides grooming Kid once a week this summer, Stitzer also volunteers in the MDA office.
"She just comes out here to give back, and really I don't know how much she is giving back because she's enjoying it so much. She loves every minute of being with the horse and hanging out with the girls at the MDA office and talking with them, she's really having a good time," said Dietlande.
And MDA camp is the highlight of her time out from school.
"At school, your friends don't usually have it and they can do a lot more than you can do, but at camp you can do the exact same thing that your friends can," said Stitzer.
"She gets to go and do things that I never dreamed she could do. The first year she went, she said she played soccer. They had bought this big soccer ball they could hit with their wheelchair. They got to ride the horse and swim and got to do things with kids. She felt so at ease there. It was so great to see her have such a good time," said Dietlande.
She continued to explain the trials faced "with having a child with a neural muscular disease, there's a long to-do list. Things to buy for them, medical expenses and unfortunately sending your kid to camp is kinda last on the list. MDA provides that experience that for a lot of kids, the experience just would not be there."
MDA sends more than 4,200 kids to summer camps each year at cost of $650 per camper. There's no charge to families. The 42nd Jerry Lewis MDA telethon will be Monday, September 3rd.