In 2019, Cochrane Pee Wee Hockey tryouts were just around the corner for then 12-year old Preston Wampler when he was struck with a severe sudden onset of pain in his sternum and upper back.
Thinking the pain was just a pulled muscle, Preston took a couple weeks off the ice, only to return for his first practice in a similar condition, which he said became worse after practice. It was the last time he was able to play hockey.
"I tried to go back while I was feeling the pain and that was kind of the point where I knew I can't do this anymore," Preston said. "I got out there and I was semi-fine, I just took a few Advil before, but when I got back home that night, it was terrible."
Preston's pain forced him to quit many of the physical activities that he loves, including hockey, golf, and boxing while he and his parents searched for the cause through months of doctor's appointments and tests.
After about three to four months of extreme pain, which Preston described as "very hard to live with," he finally received a diagnosis of chronic recurrent multifocal osteomyelitis (CRMO) from Alberta Children's Hospital pediatric rheumatologist Dr. Paivi Miettunen.
Research classifies CRMO as a rare autoinflammatory disease, which attacks healthy bone and occurs in one of every one million children with symptoms most often appearing between the ages of four to 14 years old. It is more prevalent in girls by a ratio of five to one and while the cause is still uncertain, some studies point to a hereditary link.
"At that point, I was relatively frustrated with doctors and all that stuff," said Preston. "So many people had told me they knew what it was and that they could fix it and didn't. At first, I was like 'yes, we finally know what this is.' Then I kind of got a bit sceptical, like, it was gonna be another one of those things that they say they know, but they don't."
Mary-Anne Wampler, Preston's mother, said they made multiple visits to the ER where he underwent blood tests, ultrasounds and x-rays, all of which came back clear. The experience, she said, was mentally, physically and emotionally exhausting. There were times where her son was in so much pain that he could not walk.
"We went to our GP and then we went to our pediatrician, and then we went to our osteopath, our physiotherapist and our chiropractor - the list just kept going," she said.
When both an x-ray and an ultrasound came back clear from one of the medical specialists they saw, Mary-Anne said she went back to the same office to demand an MRI and her request was denied.
Preston's torso was so contorted to compensate for the pain he was experiencing at this point that one of his shoulders reached skyward while the other was down toward the ground, explained Mary-Anne.
The same specialist that rejected the MRI went so far as to recommend that Preston get back into sports, suggesting that once his body moves around again that he would be "just fine," Mary-Anne said.
Finally, after months of no answers, Preston landed in the hands of Dr. Steve Lopushinsky, a pediatric surgeon at Alberta Children's Hospital who, after running other tests, ordered an MRI which unveiled multiple bone marrow lesions in Preston's spine, sternum and right hip as well as a basilar skull and compression fractures in his T5 and T6 vertebrae.
After more testing, he was referred to Dr. Miettunen who gave him an official diagnosis of CRMO.
Preston, now 14, is in remission after having received Pamidronate infusions once a month for nine months, about the equivalent treatment of what a stage four cancer patient would receive, Mary-Anne said.
"I think my biggest day was either the day I got my MRI and it proved my pain, considering we had pretty much gotten nowhere until that moment," Preston said. "Or the day when I woke up almost pain-free. That was probably my biggest day because I knew that something finally worked and I might be able to go back to living my life. It wasn't gone but it was way better. It was the first time that I really started to hope that I could not just get through life but actually live like a normal kid again."
A follow-up bone biopsy and MRI revealed a stable appearance of the compression fractures and no new lesions were present, confirming his remission. Preston is still at risk of future flare-ups, which is not uncommon in those with CRMO, Mary-Anne said, according to their specialist, it could be phantom pain and does not necessarily mean that new damage is present.
In April of this year, the Wamplers decided to open the CRMO Research Fund through the Alberta Children's Hospital to help research the cause and find a cure for the disease.
For CRMO awareness month at the beginning of October, the fund set a goal to raise $50,000. So far they have raised $34,455.
Dr. Mieuttunen plans to use the funding to apply for a matching government grant, ultimately providing enough money to conduct the research she feels could be an important part of the puzzle to finding solutions for CRMO, Crohn's disease and LCH, which is a form of bone cancer.
"After all the help I did receive from Dr. Miettunen and after I went into remission it just felt like something I should do to do my part now," Preston said.
As for any future treatments, Preston said this would hopefully come in the form of a cure to completely rid him, and others, of CRMO.
"Right now, I'm one of the ones who was lucky enough to be able to get the treatment that I did and go into remission," he said. "Other kids will be in pain the rest of their lives unless we figure out something here, which is probably the main reason I did this."
While Preston is unable to play hockey due to the unpredictable and high-impact nature of the sport, he still trains and spars with his coach, retired boxer Jason Parks, who has started a fight camp out of his home in part because of Preston's initial interest to learn to box.
"I've never seen anything like it before, he's very determined," Parks said. "I train seven days a week but the kids do five days and he's always asking if he can come and join on weekends."
When Preston had to take a break from the sport, Parks helped to orchestrate a video message for him from former professional boxer Roy Jones Jr. to lift his spirits.
"All Preston wants to do is help other kids now, he doesn't complain about himself," Parks said. "It's the power of mind and confidence - confidence rules. That's what's keeping Preston moving forward and fighting through this, is the confidence. If he can inspire anybody else then that's the best thing."
To donate to the CRMO Research Fund and learn more about Preston's story click here.
