Tuesday, April 12, 2011

Surfers pitch in for young hemophiliac

So, a friend showed me this article and I think it is just awesome! I've attached a photo so you can see the ridiculous helmet I had to wear when I was a baby. But when it comes to safety your parents don't care what you look like.  I guess I really did have a face only a mother could love. I hope you enjoy this article as much as I did.

Looking out over the water from the backyard of her Ketch Harbour home, Michelle Howell pointed across the bay to the tip of a headland while keeping an eye on Callum, her two-year-old son.

"Sometimes, we get surfers out past the point," she said Thursday. "It’s neat; they’ll walk all the way out along the shore to get out there."

A split second later, she darted off, chasing after Callum while her four-year-old daughter, Freya, played quietly nearby.

Callum has hemophilia A, a rare, genetic bleeding disorder that affects about one in 10,000 people in Canada.

Like other hemophiliacs, Callum’s blood doesn’t clot normally, meaning an innocuous tumble in the backyard could have very serious consequences. A fall on his knees or a tough spill onto the bum could cause lasting damage to his joints. A hard knock on the head could easily cause a life-threatening bleed.

It means Howell is constantly on her son’s trail, literally shadowing his every move and watching him like a hawk to make sure she’s there to catch him when he falls.

During the past nine months, Callum has been hospitalized eight times and Howell said they’ve visited the IWK Health Centre more than 100 times for blood infusions, a treatment that helps mitigate bleeds.

To help reduce their trips to the hospital, Howell tried to find something that would help cushion Callum when he fell.

"We tried a few things," Howell said. "We tried to cut up yoga mats. I even used lining for cupboards, but none of it held up really well."

Howell and her husband, Colin Guthrie, both avid sailors, then decided to cut up an old neoprene wetsuit to see if it would work.

The thick, rubber-like material turned out to be perfect for the job.

But the young boy quickly outgrew his first wardrobe, and his parents were out of wetsuits, which can cost upwards of $400 brand new.

With nothing suitable commercially available, a volunteer at the IWK suggested Howell contact the webmaster of ScotiaSurfer.com. They did and a short article was posted on the website outlining Callum’s condition and the family’s need for more wetsuits.

"The response from the surfing community has been great," Howell said.

In the month since the post went up, she has received eight wetsuits from surfers. Some of them told her they were more than happy to donate their wetsuits because it was a way to reuse a petroleum-based material that would otherwise be bound for a landfill.

Now she’s giving new life to old neoprene wetsuits used to protect surfers from the cold North Atlantic waves by transforming them into protective clothing for her son.

With the help of her mother-in-law, Vivian Hall, she’s sewn thick strips of neoprene on the elbows and knees of Callum’s shirts and pants to provide extra cushioning to the areas most susceptible to damaging internal bleeds. Anne Vaughan, a social worker at the IWK who works with Callum and other hemophiliacs, said it is the first time she’s heard of wetsuits being used as a cushion for hemophiliacs.

She said it seemed to be working and that was important because hemophiliac toddlers need to be able to roam and explore in order for proper and physical development to occur.

"It’s just in those early years where they need . . . a little bit of extra protection because they don’t know how to protect themselves," she said.

Vaughan said Callum is one of the country’s most challenging cases because "this little guy has an exceptional propensity for bleeding."

Howell hopes to convince local surf shops to accept donated wetsuits. Currently she’s meeting with people in random parking lots around Halifax.

And once her son’s situation stabilizes, Howell hopes to continue to create protective clothing, which she plans on donating to hemophilia treatment centres across the country.

"I feel like we’ve had really good support and I’d like to continue that, to reciprocate."


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