Jordan was diagnosed with cystinosis when he was just eight months old, and the first doctor his family spoke with gave him only ten years to live. Now approaching his 20th birthday, Jordan is thriving.
That’s not to say that things weren’t extremely difficult for a very long time. “I wasn’t very strong when I was younger and I wasn’t able to do a lot of the things my friends could do, like play sports,” Jordan says. “I couldn’t even really go to sleepovers because I had to take pills every six hours and I had a feeding tube in my stomach until I was 12.”
Cystinosis, which only affects approximately 100 Canadians, causes the accumulation of a harmful amino acid in parts of the body. Left untreated, the disease can result in an inability to swallow food due to muscle loss, diabetes, and ultimately kidney failure by the age of nine. Jordan’s medicine was keeping him alive but it had to be taken on a very strict schedule every six hours, so someone had to get up in the middle of the night, every night, to give him his medicine.
When he was nine years old, Jordan took part in a clinical trial for an advanced, slow-release formulation of an older product that showed promise in dealing with many of the limitations that the disease presented. This experience would change his and his family’s lives forever. Many years in development, the new therapy had to be taken only twice a day, with fewer side effects. Suddenly, there was no more midnight dosing and he had the freedom to do many of the things his peers could do.
“In the beginning, the disease was my whole life,” says Jordan’s mother, Barb Kulyk. “As time went on, it just became a movie running in the background. Sometimes it’s on mute, but it’s still there. I learned to make cystinosis part of the family. It became a part of our lives, rather than our whole lives.”
Finding strength in community
Barb was willing to do whatever it took to support Jordan, and would wake in the middle of the night, every night, to tend to Jordan’s intensive treatment regimen. Her internal clock still wakes her regularly, even though Jordan has been able to sleep through the night without the need for dosing for a number of years. “My mom was my essential support network, and she was basically preparing for me to live with her forever,” says Jordan.
The third of five children, Jordan learned all about the caregiver role himself as he grew stronger and helped to raise his younger sister and brother. He and his family also learned that it’s OK to depend on those around you for help when you need it, especially in a close-knit community like Consort, AB, which is two and a half hours east of Red Deer. Barb recently accepted the role of the town’s Chief Administrative Officer, a “dream job” that would have been much too onerous for her to take on only a few years earlier. “It’s not that big of a town, but I love our little community,” she says. “These are the people that looked after my kids when I called out of the blue and said, ‘We have to go to the hospital right now.’ When they say it takes a village to raise a child, sometimes it really does.”
A bright outlook
Jordan has made a real home in Consort. Today he is able to work full-time in the shipping department for T&E Pumps, the town’s largest employer, and the company is in talks to send him for further education as a parts technician in the near future. “They’re an amazing company,” Jordan says. “The amount that they’ve done for me is incredible.”
Now financially independent, Jordan was recently able to buy his first home, just nine doors down from his family, and cherishes the opportunity to live like most others his age. He now has an active social life free of the stigma of intense body odor, one of a number of side effects that plagued him well into his teens. “When I was younger, I never thought my illness would allow me this level of independence,” he says.
And Jordan is not the only one in awe of how much he has overcome. “He’s my hero,” Barb says. “Jordan never has to do one more thing in his lifetime to ever impress me. I’m already truly as impressed as I could be.”
For future generations of cystinosis families, the outlook continues to grow brighter. “We’re excited about the new research that’s coming down the pipeline,” says Jordan. “There has definitely been a huge jump in research and funding for cystinosis in the last few years and that’s amazing.”
Jordan’s story, incredible as it is, may well become more the norm than the exception so long as we as a society remain committed to banding together to support those in need, regardless of how rare their needs may be.
It takes a village, after all.
Jordan with mother, Barb Kulyk, at her home in Consort, AB. (Credit: Rene J. Collins)
The Canadian Organization for Rare Disorders (CORD) is dedicated to advocating on behalf of the rare disease community in Canada. Please visit www.raredisorders.ca to seek additional resources and to support the fight for continued access to innovative treatments in Canada.
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