Frenchtown, NJ celebrates Steven Scully's 11th birthday
He suffers from spinal muscular atrophy
On Sunday, the small village of Frenchtown, Hunterdon Co., N.J., got together for a special birthday party. It was special because for one little boy, it's likely to be his last.
"He has a disease called Spinal Muscular Atrophy," said Stephen Scully's brother, Kent Ridge.
"Because he's never been able to put weight on his bones, he has severe osteoporosis," said Stephen's pastor, Rev. Janice Newhard of Baptistown Church. "Both of his hips are broken."
When he was born, doctors gave Stephen just two years to live. On Sunday, he turned 11.
"It's hard seeing him like this," said Ridge. "It was hard finding out."
Stephen has beaten the odds, but is now in hospice.
"All he asked for his birthday was just to have a real birthday party with friends, and I think any kid deserves at least that much," said family friend Heather Nerwinski.
He got so much more. The police made Stephen an honorary member; so did the fire department. The National Guard came to see him, and even brought World War II vehicles.
"We got immediate responses, within hours," said Nerwinski.
And Stephen's hero, NASCAR driver Tony Stewart, sent race tickets along with a special message.
"I wish I had as much courage as you do," his letter wrote. "I hope you have a really good birthday and have fun with your family. Your friend, Tony Stewart."
Stephen had to leave his party early. He had a 102 fever.
"It is excruciating pain," said Rev. Newhard.
But his short time here has left an indelible mark on this community.
"He's my influence; he's my hero," said Ridge.
"We talk about heaven a lot, and he's looking forward to being able to get up and walk and run when he goes there," said Newhard.
It's a trip he won't make alone. His whole community is standing with him.
Copyright 2013 WFMZ. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.