A fundraising effort has been launched in the name of a newborn boy who suffers from a rare and painful skin disorder.
Born Dec. 9 in Prince George to parents Christy and Bryndel Fell, Shea Fell is afflicted with junction epidermolysis bullosa (EB) that makes his skin so sensitive that even the slightest friction gives him blisters.
It means the youngster will need special seamless clothing, ultra soft blankets and special linings for bathtubs, car seats and his crib. It also means an ongoing need for medical supplies and special dressings to manage the pain.
And the family faces travel expenses as Shea gets further care at B.C. Children's Hospital in Vancouver, where he was transferred shortly after his birth.
There is also a strong concern he has a variant of the genetic disorder that causes the blisters to compound on themselves and to break out internally, which would impair his ability to ingest food properly and give him difficulty breathing.
"It's going to be miraculous if it's not the difficult version," said Bryndel.
Even if that's not the case, Shea faces a lifetime of special care.
"Daily wound care, pain management and protective bandaging are the only options available," according to the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA).
EB affects one of every 20,000 live births and there is no known treatment or cure.
Those born with EB "are often called 'Butterfly Children' because as the analogy goes, their skin is as fragile as the wings of a butterfly," according to DEBRA.
A family friend has started up a fundraising campaign through www.gofundme.com/Babyshea and as of Monday afternoon, $12,470 has been raise through donations from 184 people.
The parents have also opened an account at RBC and those who prefer to donate directly can contact them by e-mail at [email protected].
The goal is to raise at least $25,000.
"We're in early days yet and we don't know exactly what we're going to need," Bryndel said when asked if $25,000 will be enough. "It may we are going to have to potentially relocate closer to the medical services that he requires, so that's a conservative estimate."
Shea is the parents' first child.
"In addition to going through all this normal, learn-to-be-a-dad, learn-to-be-mom, this is an entirely different level," Bryndel Fell said. "I'm jealous of those parents that only have to learn about changing a diaper but when I look at him and he looks at me with those big eyes of his, I'd do absolutely anything for him.
More information on EB can be found at www.debra.org.
