SAM

It was 2006 and we were living a pretty idyllic life on Bowen Island with our three-year-old, Sam. At the end of the summer he developed a rash on his cheeks. Then wee craters on his knuckles and rash on his knees, elbows, and ankles started to appear. This got worse and worse and our GP sent us to a dermatologist.

Over the next few months Sam also gradually started showing signs of muscle weakness, fatigue and was complaining that his “bones hurt”. He was starting to have trouble climbing the stairs, couldn’t sit cross-legged, and was having difficulty getting in and out of the car. We’d be standing there, assuming he was just dawdling and distracted, saying “Come on, we’re running late! Get in the car already!”

By March, Sam was in pretty rough shape. He couldn’t run very far, didn’t want to climb much at the playground and had difficulty riding the bike we gave him for his fourth birthday. When we returned for a follow up dermatologist’s appointment later that month, she asked us about muscle strength issues and immediately sent us for blood work. She also mentioned the name of a disease: Juvenile Dermatomyositis (a form of childhood arthritis). Online research yielded a list of symptoms: fatigue, muscle pain, rashes and difficulty climbing stairs and getting in and out of the car.

The disease had also entered a very aggressive stage and, in the mere week and half before we could get into BC Children’s, we watched it take control of his body. He couldn’t climb the stairs, couldn’t walk far, and his breathing had become laboured. The night before our appointment, he woke up choking because he couldn’t swallow.

It was the Thursday before Easter, and when Dr. Petty at BC Children’s walked into the examination room, we had confidence that things were going to be okay. He calmly explained what the next few years were going to be for us: IV treatments with high doses of prednisone, years of methotrexate and high doses of prednisone, bone scans, physical therapy, etc.

In so many ways we considered ourselves and Sam lucky. We were in the hands of this amazing team of rheumatologists and specialists. As time went by, and Sam responded perfectly to treatment, we felt truly blessed. And that August, less than five months since the kid couldn’t even step up on a curb, this four-year-old and his mom ran a 5K race together in just over 42 minutes, saying the whole way, “my muscles are strong now mommy!!”

Modern steroid treatments haven’t been around for that long. As recently as the 1960s, a third of kids diagnosed with his form of arthritis would be severely handicapped, and a third would die. Sam was born on the right side of history. Without research from scientists and doctors, in large part funded by organizations like Cassie and Friends, our son might not have even seen his fifth birthday, he wouldn’t have run that race, and likely wouldn’t be what he is today: a six-year-old in remission!