The parents of a newborn boy who suffers from a rare and painful skin disorder have received "overwhelming support" since a fundraising effort was launched this month to help them through the financial challenges they will be facing.
Born Dec. 9 in Prince George to parents Christy and Bryndel Fell, Shea Fell is afflicted with junction epidermolysis bullosa (EB), which makes his skin so sensitive that even the slightest friction gives him blisters.
It means he needs 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.
So far, $32,425 has been raised through www.gofundme.com/Babyshea and donations continue to come in. The goal has been doubled to $50,000 as the family gets a better idea of the expenses they will be facing.
"Christy and I have been absolutely blown away by the support that we've received both in terms of people wanting to donate to Shea's care and I understand there is a whole army of people who want to help us directly once we get back to Prince George," Bryndel said Monday.
That likely won't occur for another month at the earliest but friends and co-workers have volunteered to cook meals and do grocery shopping for the family and they're working to get a raffle off the ground.
For four days this week, the family will be at Canuck Place hospice to get advice from pain management specialists on how to make Shea as comfortable as possible, especially during the dressing changes.
The family is also waiting for the results of more tests after receiving word that the version of EB Shea contracted may also give him blisters internally, affecting his ability to breath and digest food. It could be so serious that he may have only two to three years to live.
They're now waiting for blood tests to confirm the seriousness of the ailment and whether it was caused by a spontaneous mutation or passed down genetically from one of the parents.
Shea has been "doing fairly well, most days," so far.
"He is receiving regular doses of Tylenol for the pain he gets from the blisters in his mouth which makes it a little bit more difficult for him to feed," Bryndel said. "One of the big things we're worried about is the wound on his leg is not healing the way we'd like."
On the bright side, the family has received some Thermasilk, which means Shea can now wear clothing.
"He's now in a little sleeper and sleeping in a crib like any other baby would, so that was pretty exciting," Bryndel said.
A new website, www.loveforshea.com and Facebook page, www.facebook.com/LoveForShea, are now providing updates on Shea and his parents. In addition to www.gofundme.com/Babyshea, donations are also being accepted through RBC and an account in the family's name has been set up at BBK Bottle Depot.
As well, the Order of the Royal Purple has donated $10,000 over and above the money raised through the other sources.
Tina Gillanders, one of the co-workers of Christy's at the UNBC registrar's office who has been helping out, said the family faces steep expenses and will make good use of the money donated.
"Just from the things we've been looking at, a pair of baby socks which might be $2 at Superstore are going to cost upwards of $40 for baby Shea and a sleeper that's maybe $10 or $20 even, is going to be more than $100 just because of the special material," Gillanders said.
