Posted at: 06/15/2012 4:34 PM
| Updated at: 06/15/2012 5:42 PM
By: Benita Zahn
Photo: Lou Swierzowski/WNYT
"I also like learning about science and math and stuff. It's very fun for me to be in school."
That 10 year old Stephen Thomas is in school and excelling is a testament to how remarkable he is. Stephen battles Epidermolysis Bullosa, EB for short -a rare, genetic skin disorder causing his skin to blister at the slightest touch.
Classmate Zach Moore puts it this way: "His skin, it's like the grass if it doesn't have roots it can come out really easy."
So his skin needs to be bandaged for protection and he's on a tight regime of pain medications.
Despite this challenge, Stephen's got an incomprable zest for living and a dedicated support team.
There are nurses Molly Holm and Toni Anne Riozzi who take turns accompanying him to school after helping with his care at home.
His grandparents, Julie and John Meacher with whom he lives. Teachers -Jennifer Graziano and Jennifer Taylor.
And his classmates at Germantown Elementary School who've gently enveloped him in a relationship that's strengthened them all.
"He can still do the stuff we do but we don't horse around in class" says LeighAnn Gallant " But he's still one of us."
And like any other fourth grader he's going through a growing spurt. But in Stephen's case that's threatening to sideline him.
He's getting too big to maneuver into his grandparent's small car. Remember, he can't tolerate any friction to his skin.
"And we can no longer pick him up safely" says his grandmother, Julie Meacher. They need a van they can just wheel him into.>
So on June 16th the community will host a fundraiser to help pay for a van. Earlier this week his classmates got a jump on the fundraising. Each paid a buck for the privilege of wearing a hat to school.
Classmate Cassia-peia Douglas Dufresne "I told my mom I needed a dollar for Stephen to get a handicapped vehicle"
Upwards of a thousand dollars was raised, because the whole school, some 500 students - grades k through 12 - joined in- sharing one simple sentiment expressed by classmate Melanie Stier,
"He's my best friend in the world. I hope he gets the van."
To make a donation go to any First Niagara Bank : THE STEPHEN THOMAS SUPPLEMENTAL NEEDS TRUST"
The van can cost upwards of $36,000. There is grant money to retrofit it for Stephen's needs.