Brotherly Love: Drew's Hope For Himself And Others

NEWTOWN, Pa. (CBS) -- Meet the Ferrandino brothers of Newtown, Gavin and Drew, young boys full of laughs at Disney World, or searching for the perfect Christmas tree. For parents Tony and Katie Ferrandino, their world seemed perfect until Drew's third birthday.

"I was sleeping with him, and he literally shot up off the bed and started convulsing," said Tony.

Tony says in a matter of months, Drew could no longer speak, walk, or even feed himself.

"You keep going and trying to live the best you can," said Tony.

Drew has a very rare genetic brain disorder called Batten disease. "What it is, is an enzyme deficiency in the brain cells," said Tony. There is no cure. Life expectancy is 12 years. Drew is now 8.

"People who have terminally ill children or lost children, your body kind of goes through life, but your spirit never really catches up," said Tony.

But Tony says with lots of love, they're making the best of it.

"That's why we live each day with hope," Tony said.

That hope has become a foundation called Drew's Hope. It raises research money and awareness of Batten disease to not only help Drew, but others as well.

That awareness allows Drew to stay with the same kids he started school with at Newtown Elementary.

"We teach him things, but he teaches us a lot," said teacher Ann Marie Young.

Like compassion and empathy and, Tony says, loving each day even if your spirit can't keep up.

"I'm blessed," said Tony. "Even with the hardship I feel blessed."

Batten disease is so rare there are only about 1200 children with it in the United States. Right now Tony Ferrandino is at a conference with the National Institutes of Health talking about Batten disease.

Reported by: Dave Huddleston, CBS 3

Do you know someone doing good in the community? Email Dave at Huddleston@cbs3.com.

RELATED LINK:
Drew's Hope: http://drewshope.com/Drews_Hope/Home.html