OMAHA, NE (CNN NEWSOURCE) – An experimental drug is giving one Nebraska family hope.
They say it is helping their son who has a deadly disease.
3-year-old Osama Hamad is doing things his parents weren’t sure ever would.
“We weren’t sure. We were very hopeful but we weren’t sure,” Deanna Hamad, his mother, said.
Simple things, like talking and walking. Things they say are being made possible by an experimental drug.
“It’s kind of like Febreeze. The medicine goes in and it grabs the cholesterol and it brings it down and helps it flush out of the body,” Deanna said.
Osama has Niemann Pick Type C, also known as Childhood Alzheimer’s because the body forgets how to work.
“Gaze palsy which is an eye movement,” Deanna said.
“It can not go up as quick as other kids,” Osama Hamad, his father said.
“So that affects his coordination,” Deanna said.
The drug seems to be delaying Osama’s symptoms and his parents are pushing the FDA for approval.
That way he can continue using it.
“This is what it is. We don’t have options right now,” Deanna said.
Niemann Pick Type C is fatal and there is no cure.
Right now, Osama does a list of therapy sessions, so he can continue to talk and walk.
“Sometimes I just want to forget about it or just to ignore it,” Hadad said.
“We do worry every night what will happen,” Deanna said.
In the meantime, they say they’ll keep fighting for their son, pushing for FDA approval, and remaining hopeful the drug will continue to work.
“I’m definitely more optimistic now. He’ll get through it, he’ll fight his way and we will find him a cure,” Deanna said.