By: Klaudia Ceglarz
KELOWNA — The family of a baby boy born with a rare genetic condition is facing a tough few years ahead. Christy and Bryn Fell, former Okanagan residents, were shocked when just days after their son Shea was born he was diagnosed with Junctional Epidermolysis Bullosa (EB.)
“Shea has a protein that is missing from his skin which keeps the deep layer of skin attached to top layer,” says Shea’s dad, Bryn Fell.
The one month old boy was born with skin missing from his hands and legs and will have to have them bandaged for the remainder of his life.
Little Shea can only be picked up in a special blanket because any friction causes blisters on his skin. The blisters are even inside his lungs and intestines. His condition is the most severe kind of EB and doctors have given the baby boy only 3-years to live.
“We watch him every day and it’s so hard to watch a baby be helpless and there is nothing we can do to make it better,” says a tearful Christy Fell.
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Shea was born in Prince George but was airlifted to Children’s Hospital in Vancouver immediately after. He remains at the hospital surrounded by his parents and a group of specialists.
Family and friends in Kelowna are rallying behind the grief stricken family trying to raise awareness and money to help. An online fundraising campaign is now underway with hopes of raising $50,000.
“There is no time off they will be 24-7 dedicated to this baby they can’t work, there will be no income coming,” says family friend Chris Wills.
The family is expected to be released from hospital eventually but the baby will require round the clock care.
“Everything is astronomically expensive. A onesie for special care of the baby is over 200 dollars. He needs special diapers and special change tables. Also family trips they will have to go back and forth to children’s hospital,” says Wills.
So far, online donations have garnered almost $23,000 but more help is needed.
If you would like to donate, you can do so at: http://www.gofundme.com/Babyshea.
To learn more about Epidermolysis Bullosa go to http://www.debracanada.org.
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