Okanagan teen using passion for cycling to raise awareness about rare disease she lives with

Athina Merckx is an active teenager. Two years ago, though, when she was 13, her activity came to a sudden halt.

It all started when the Kelowna girl noticed something unusual on her leg.

“I felt something at the back of my knee after swim practice one day,” Merckx told Global News.

She was eventually diagnosed with what’s called Desmoid Fibromatosis.

“They’re tumours that are in the body,” said Jody Merckx, Athina’s mom. “The body creates these tumours and they’re like scar tissue and they tend to invade on other tissues.”

Desmoid Fibromatosis is very rare and has no cure.

According to the Desmoid Tumour Foundation of Canada, the disease affects approximately five to six people per million, every year.

Desmoid tumours are said to be locally aggressive and can cause life-threatening problems or even death when they invade vital organs.

According to the foundation, “the tendency for recurrence with surgery makes the treatment of these tumours challenging.”

2:09 Health Canada approves gene therapy to treat spinal muscular atrophy

Jodi Merckx recalls the day her daughter was diagnosed in February 2019.

“It was probably the worst day of my life, of all of our lives,” Jodi Merckx said.

It was especially difficult because they had never heard of the disease and not much was known about it.

“It was really scary for me because no one else could tell me a definitive answer of what it meant,” Athina Merckx said.

5:32 Kids with Cancer: Ronan’s fight against a DIPG tumor

In the two years since the diagnosis, Athina Merckx has made many trips to B.C. Children’s Hospital for treatment.

She’s also had surgery to remove a tumour.

While she’s doing better now, tumours will likely be something she’ll deal with for the rest of her life.

“They’re still there, but they’ve stabilized and are not growing. But they tend to do that for a few years, and then they’ll possibly come back,” said Jodi Merckx.

Athina Merckx is now trying to raise research funding and awareness about the disease — and she’s doing so by using her family’s passion for cycling.

“Cycling is something that’s close to my heart I’ve grown up with it,” she said.

Her parents, Jodi and Axel Merckx, are the organizers of the popular and long-running Grand Fondo cycling event in Penticton.

They have created a virtual riding event called Athina’s Ride in hopes of having the disease become better known and better researched.

“Breast cancer and other types of cancer, heart disease … a lot of people know about it and they raise money for it. And this disease just does not have that,” Jodi Merckx said.

The event has people cycling on their own schedules and paces and raising money.

But anyone can take part or choose to donate.

2:24 4 boys on a mission to raise $5K for charity surpass their goal, raise $17K

“It’s ending on July 11, so you can ride anytime between now and then, any distance you want,” Jodi Merckx said.

“You could walk, you could run, you don’t have to ride a bike if you don’t have one. It’s whatever works for you, just to be active and out in the community and supporting it.”

The goal is to raise $100,000. So far, more than half of that has been collected.

All of the donations go directly to the Desmoid Tumour Foundation of Canada

2:14 Rare blood disease patients demand Canada scrap new pricing rules

Athina Merckx hopes her story and the cycling event make a difference for others who will be diagnosed with the disease.

“I hope that the next kid or person or anyone who is diagnosed with this disease understands,” she said, “and has a definitive answer of what they can do and what has to be done.”

Click here for more information or to register and/or donate.