Dylan Parr won't be welcome at hospital
Published Tuesday, August 24, 2010 6:10PM MDT
Most teenagers can't wait to turn 18.
But, a Calgary boy with an extremely rare skin disorder is dreading the day he becomes an adult.
That's because he'll have to find new doctors to treat his painful condition.
Like most 17-year-old boys, Dylan Parr likes to spend his time playing computer games, but Dylan isn't like other boys his age.
He has a rare, genetic skin disorder called epidermolysis bullosa.
Dylan says, "People treat me differently because of my skin."
He is missing a gene that's supposed to hold his skin cells together.
If somebody simply brushing past him, it can tear his skin, so now Dylan can't go to school.
The disorder also creates blisters on his body and in his throat.
Dylan told CTV Calgary, "Sometimes just walking hurts my feet. Lying on my bed sometimes hurts and that kind of stuff."
For the past 17 years, a team of doctors at the Alberta Children's Hospital have helped treat his symptoms.
With their expertise and with the help of his Mom, Dylan has defied odds.
Margaret Parr says, "They told me when he was born that by the time he was 15 he'd be wheelchair bound."
But when Dylan turns 18 in December, he will be done at the Children's Hospital.
He'll have to find new doctors who likely have not had experience treating his rare disorder.
"The thought of starting all over again and re-educating everybody, which I know we will have to. It's just causing me so much anxiety." Margaret says.
One of Dylan's doctors says it will be difficult for Dylan to move to a hospital where he doesn't have a support system in place.
Dr. David Sigalet told us, "It's a problem. We have a lot of kids like this that have been successes, if you will, of our groups and treatments here and then they go off in the adult world without having a specific network there to take care of them."
And it's not just the doctors the Parrs fear losing the support as well.
Margaret says, "When he turns 18 we get cut off of all children's funding, whether it is from the Federal Government, whether it be from the Alberta Government… we get cut off completely the day he turns 18."
Dylan's mom doesn't have time to add up future bills right now.
She's still trying to make final payments on a $2 thousand dental bill.
Dylan's condition affects his tooth enamel and can cause all of his teeth to fall out.
Friends are planning a fundraiser to help the Parr family, but details have not yet been released.
Alberta Health Services say all patients who transfer from the Children's Hospital to an adult hospital continue to receive the same standard of care.