Jonah Wood Weishaar turns 2 years old on Friday. Like many energetic Park Slope toddlers, he loves Elmo, dogs and running around Prospect Park. But Jonah is slowly dying.
He was diagnosed in May with a rare genetic disease known as Sanfilippo syndrome that causes children to lose the ability to speak, walk, eat and eventually die — often before their teens. There is no cure, but his mother, Jill Wood, is on a mission to find one.
“I get up at 5 a.m., two hours before he wakes up. I light a fire under myself and say, ‘What am I going to do today to save my child’s life?’” Wood said.
Some 100 children in the U.S. are believed to have Sanfilippo Type C like Jonah. A doctor in North Carolina wants to conduct the first-ever study on the disease but needs 10 children.
Wood is trying to track them down. She’s found four families willing to participate.
To learn more visit www.jonahsjustbegun.org