Rare Disease Attacks Bones

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Thursday, March 18, 2010

By Gord Bacon

Kyle Vankouthnett has undergone more surgical procedures by the age of 10 than most people will face in a lifetime.

So saying the Parkview public school student is a trooper may be an understatement.

The Bumpy Bones Club member, who was diagnosed with a rare bone disorder at birth, is all smiles despite having to live without activities many kids take for granted.

Multiple hereditary exostoses is a rare genetic disorder causing benign cartilage-covered tumours. Predominately located on the growing end of the long bones of the legs, arms and fingers, the growths can cause short stature, nerve compression and reduced range of motion to accompany bone and skeletal deformities, early onset arthritis and chronic pain.

"Kyle was diagnosed at six months. We noticed at four months that his fingers wouldn't close all the way. We were told maybe his fingers were broken at birth, so we had x-rays done and they found six other bumps. Finally we were told they were tumours and were referred to a specialist in London," said Kyle's mother Crystal Noel.

She said her son has been a member of the Bumpy Bones Club for a couple of years. He makes T-shirts and bags he donates for kids coming out of surgery.

She said her son has undergone three surgeries to shave down growths in his fingers and knees.

"MHE is hereditary but the doctors told us Kyle was one of the rare cases where there was no family history. They called it a spontaneous mutation," she said.

You wouldn't know there was something wrong with Kyle to look at him, according to Noel.

"The worst time for me is right after surgery, I can't move very well and it hurts," he said before lifting the leg of his jeans to reveal a two-inch bump on the side of his left knee.

Kyle went through a brief period where he wouldn't wear shorts, his mother said but has since demonstrated an emotional IQ not often seen in a 10-year-old boy.

"If other kids give me a hard time it's because they don't know what it (MHE) is," he said. "My friends are actually very supportive."

Noel, whose extended coverage through Green Shield pays most of Kyle's medical costs, said her primary concern is what may happen later in life.

"He's always so upbeat and it's hard to tell him there is something wrong with him. It's a good thing as a kid but it's his future we worry about," Noel said.

"We recently had his pediatrician sign his disability papers so we can start the process of getting his disorder recognized, otherwise he's going to have a tough time getting coverage when he's on his own.

"He just started doing up buttons and he's 10. His fine motor skills just aren't there. He can't write for long periods so his teachers have to help him. They let him start using a laptop recently. When he gets into a workplace, who's going to write for him?" said the mother of three.

Kyle, who recently had two metal plates inserted in his ankles to help prevent bowing in his lower leg bones, lists video games, baseball, golf and "bugging" his 13-year-old sister Kali as some of his favourite pastimes.

However, with the nearest orthopedic surgeon equipped to handle his condition two hours away in London, his mother said sports like hockey or football are off limits due the high risk of injury.

New York native and MHE coalition member Susan Wynn said she started the Bumpy Bones Club more than 10 years ago after her daughter was diagnosed with MHE.

"She's had nine surgeries since the age of 10. She suffers from arthritis and walks with a cane."

Nicole, now 21, is studying graphic design at Purchase State College in Purchase, N.Y., utilizing her ability to draw, one of the few things she can do without pain, her mother said.

Kyle says he loves playing baseball and hopes to become a contractor like his stepfather Eric Noel, but for now, though there are things he just can't do, he is content to make care packages for the Bumpy Bones Club, play some video games and mess around with his woodburning kit.

The boy whose mother says is rarely seen without a smile and never complains, despite his medical issues, will continue to undergo treatment in an attempt to stay ahead of his condition and try to lead a normal life.

 

© Copyright (c) The Windsor Star

Source: The Windsor Star

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