"He tries to be happy. He doesn't feel good a lot of times. But, he was given to us by God so we just take things one day at a time and he's a true blessing to us," said Jill Taylor.
She needs a new wheelchair and the family is in danger of losing their home. On top of that, the Taylor's 16-month-old son, Micah, is also sick. The Taylors worry he may also have the rare disease.
Insurance won't cover most of the Taylor's bills because the insurance company considers the treatment of this rare disease experimental.
The next fundraiser is on September 2, 2009, at the Conga Room in Los Angeles.