SAN JOSE, Calif. (KTVU) - For 13-year-old Tony Rey life has always been hard. But now it's getting harder, not only for him, but also for his mother and sister.
They need help.
"I don't sleep at night. I watch him around the clock. I'm afraid to lose my son," said Diana Rey, Tony"s mother.
Tony was born with a rare genetic condition called phelan mcdermid. There are only a thousand known cases of it. He is missing part of a chromosome which affects his brain.
He functions as a three year-old and he is autistic. There is no cure.
In their home in San Jose, Tony's mother takes care of him with help from his 15-year-old sister Ameera when she is not in school.
"He's sick every month. He is in and out of the hospital. The last thing was pneumonia," said Diana.
Tony's health has deteriorated. Fluid collects in his lungs. His family has to hook him up to a machine four times a day to clear it out. He almost died from an infection.
"This is our life for the rest of his life. And I have no problem doing this as long as my body can take it. And his.
We first met Tony three years ago. His mother was raising $3,000 for a bicycle for special needs kids.
With Tony's condition worsening, the Rey family has gone from needing a special bicycle for him, to a special van; one that can accommodate a reclining wheelchair.
Tony's mother is trying to come up with $50,000 through the website youcaring.
With Tony weighing over a hundred pounds now, its getting too hard to get him into their Honda.
She says one of Tony's favorite activities is riding in a car.
"As long as he is here, I am good. I'm good doing whatever I can," she said.
If you would like to contribute to the Rey family's fund, here is the link to youcaring.