Vancouver teen plays past rare genetic disorder
Staying active through hockey and golf helps Nicklas Harkins stay loose and limber despite pain
By Tom Hill, Special To The Sun
July 5, 2012
Seventeen-year-old Nicklas Harkins, who plays and coaches hockey and golf, skates with his father, former NHLer Todd Harkins, at the North Shore Winter Club.
Photograph by: Ian Lindsay, PNG , Special To The Sun
To see Nicklas Harkins kick out a goalie pad and make a tough save on a breakaway, you'd never guess the adversity he's faced thus far in his 17 years.
When he was just five, Nicklas' mother Kirsten noticed the hand prints he had made in his kindergarten class were a little unusual. Only the heels of Nicklas' hands and his fingertips had indented in the hardened clay - his joints were too stiff to straighten out his fingers.
This was one of several minor physical traits that added up to enough that Nicklas was soon visiting doctor after doctor, being tested in every which way. In March 2001, at last a diagnosis was confirmed. Nicklas had mucopolysaccharide disease, or MPS.
MPS is a rare genetic disease that leaves children without an enzyme critical to their development.
Depending on the type of MPS, symptoms can include cardiovascular and respiratory problems, stunted growth, severe joint stiffness and, in some cases, premature death.
His parents were devastated, but determined to find a cure or at least a treatment for their son, who had already begun to experience several symptoms.
After years of trying, Nicklas was eventually admitted to one of the few clinical trials studying MPS, which happened to be administered here in Vancouver.
The crux of the trial was a groundbreaking new enzymereplacement therapy that scientists were optimistic could see exceptional results in the short term. Through weekly infusions, each taking several hours, Nicklas would now receive the enzyme his body so sorely needed.
The treatment had an immediate effect, but it meant Nicklas would spend hours and hours of his young life at the BC Children's Hospital in Vancouver.
From the day he first arrived, Nicklas was introduced to the hospital's Child Life Program, which has child care specialists, such as Diane Hart, who "help kids be kids."
Hart and her colleagues roam through the pediatric ward and, as she says, "use play as the main modality" for helping children stay positive while receiving needles, recovering from surgery or, as in Nicklas' case, avoiding extreme boredom during long weekly visits.
For Nicklas, the program helped make the hospital feel like his "home away from home" for the eight years during which he visited for treatment every week . "I got to know a lot of great people there and all the nurses and doctors have been great to me," he said.
Nicklas now receives his weekly infusions at home. But the treatment has played just one part in slowing the onset of his MPS. Inspired by their father, Todd Harkins, who had a career in professional hockey, Nicklas and his brothers have been lifelong sports aficionados.
For his part, Nicklas plays, refs and coaches hockey, and is a member of his high school's golf team. Because MPS damages and constricts joints, Nicklas' highly active lifestyle is critical in helping him maintain his mobility.
"It's really good for me because when I don't [stay active] I get sore and my joints get stiff, but once I keep active I just feel a lot more loose and free," Nicklas said.
His active approach to his health care is succeeding, despite the physical challenges Nicklas faces.
When doctors suggested he shouldn't play contact sports because of the sensitivity of his joints, Nicklas instead suited up in goal. And while stiffness in his shoulders might have made golf seem impossible, he has worked with golf pro Andrew Ripley to modify his swing and hit more fairways than ever.
Doctors are unsure exactly how Nicklas' health will progress as he ages, simply because his case is so unique, and his treatment so new. However, Nicklas' weekly infusions continue to abate the development of his symptoms, which suggests a hopeful prognosis.
That has Nicklas, with clubs and pads tucked under his arms, going forward with a more optimistic outlook than could have been dreamed of years ago.
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