Grateful For Graham Walk To Raise Awareness Of Utica’s Child’s Rare Condition
A fundraising and awareness walk is planned later this month to put a spotlight on a very rare condition that a Utica toddler has faced since birth. The disease is so destructive it makes it hard for three-year-old Graham Robertello to go to bed at night without waking to new, painful blisters or bruising the following morning.
Epidermolysis Bullosa (EB) is a connective tissue disorder that makes a person's skin extremely sensitive to any abrasion. Even the gentle friction of fabric rubbing against his neck from a shirt collar can new blistering and serious pain.
Graham's parents, Carl and Amanda, joined WIBX 950 this week to explain this rare disorder and how difficult 'typical' childhood experiences can be on a daily basis.
"When he falls, like kids do, he has to wear bandages for weeks at a time. It's pretty immediate - the skin will begin blistering and sometimes it falls right off," Carl Robertello said. "We have to poke him with needles sometimes just as a way to drain the blisters."
His parents use bandages to pre-emptively cover his arms, legs and torso, providing some additional protection as the toddler does things toddlers do.
"He was rolling around in his crib last night and woke up with new wounds all over his body," Carl said, expressing how innocent, seemingly normal skin contact can leave tremendous damage all over his son's body.
EB is seen in only about 200 over the roughly 3.6 million children born in the U.S. each year, Amanda Robertello said. The variation Graham suffers from is called Recessive Distrophic EB, impacting approximately 1 in a million, she said.
The issue is that Graham lacks the collagen required to hold together his various layers of skin, his parents explained. The couple didn't know of his condition until he was born. There is currently no cure or even treatment for the condition.
Grateful For Graham is a fundraising 5k run and walk that will benefit the EB Research Partnership Group, an organization that is working to identify treatments and hopefully someday a cure. The event is happening on Saturday, April 29, at the Route 840 trail on Middle Settlement Road in New Hartford, near BOCES. It begins at 9:00 a.m. and costs $25.
If Graham looks familiar, it may be from his recent tour and promotion at the Utica Police Department (photos above). Graham was fitted with his own uniform, hat and identification.
More information about the run/walk and Graham's condition can be found at Grateful for Graham on Facebook.