It was a staff member at Max’s daycare centre who first noticed something was wrong.
He fell a lot and was a little behind the other kids when it came to climbing and moving about. We had a feeling that something wasn’t right when Max couldn’t master the ability to jump. We eventually took him to our family doctor who referred us to a pediatrician and Max was sent for a blood test.
It was a phone call we’ll never forget. We were told that the results showed what we didn’t want to see – a high likelihood that our two year old boy, like 1 in 5,000 boys, had Duchenne muscular dystrophy.
The three of us clung together in an effort to withstand the enormous blow of the news. We were sobbing, and Max, who had no idea what was happening, was comforting us with little kisses and hugs.
The following two weeks were spent in a haze of grief and desperation as we waited for a follow up appointment at the hospital where they would confirm – or not – the diagnosis of DMD. On the day of our appointment when a genetic counselor entered the consultation room along with a team of neuromuscular specialists, I knew that life as we knew it had been snatched away. We sat numb, listening to how our baby would be in a wheelchair by the age of 12 and that his life expectancy was in “the third or fourth decade”. We were told that we were in the ‘honeymoon period’ of the disease – a description that made me furious at the time. It was such a dreamy sounding reference being held up against the worst news we had ever heard, and at the same time it told us that the future was only going to get worse.
What hit us hardest was the loss of the sense of being carefree. Until that point, we’d not had a single care in the world, but now our future had been torn away. We experienced incredible grief. I spoke to a counselor and cried more tears than I ever thought possible. And then very, very slowly this awful, unthinkable reality became the new normal and life became about finding ways to cope.
For Andrew, this has meant throwing his energy behind the search for a cure. Right from the very beginning he was driven to take action because, as long as Max is still walking, there’s hope. The day after the blood test result we went to the Melbourne Museum to get out of the house and take our minds off the news. In the gift shop he spotted a card with the quote, ‘Falling down is part of life. Getting back up is living’. Not usually one to be moved by cheesy motivational quotes, this one touched a nerve and was the impetus behind his decision to fight this devastating disease. It helped him formulate the idea for ‘Max’s Big Ride’ – a 600km journey from Ottawa to Hamilton in a cargo bike to raise funds for research. It’s an ambitious task, but if the worst thing imaginable has happened, then surely the best thing imaginable is possible too.
That was when we reached out to Jesse’s Journey. We believe the answer to DMD lies in innovative research, and we became part of the Jesse’s Journey family. In two years, we have raised more than $70,000 for research through Max’s Big Ride and Max’s Big Climb, and we’re looking forward to putting plans in place for 2017.
After a couple of years of coming to terms with having this disease in our lives, I almost didn’t dare to imagine that there could be some hope for Max. The disappointment would be too much to
handle if I let myself think he might actually beat this thing, and then I would have to experience the overwhelming grief all over again. But there was one treatment – Translarna – that was close. When we heard about Health Canada’s Special Access Program which would allow us to apply for access to the drug, it seemed too good to be true. When we were approved and had the boxes in our possession, it was a situation I hadn’t even let myself dream about. But would it work?
It didn’t take long before we noticed an improvement in Max’s abilities. Now six years old, he’s able to climb to the top of the playground equipment without any help; he can sometimes go up and down stairs without holding onto the bannister; he’s walking longer distances without holding our hands, and one morning he RAN all the way to school without falling over. He recently started soccer lessons and he hasn’t fallen down on the bumpy field. And all of this with no side effects.
For a kid without DMD, these feats aren’t significant or in any way noteworthy, but for a boy with DMD they’re huge. It means he can keep up with his friends for longer. It means he can be included in sports. It means we can go on outings unhindered by an extra set of wheels for when his legs get tired.
Now, beneath all the fear and worry is a very small glimmer of hope that just maybe we will beat this thing. The landscape is changing. Just a few years ago there were no treatments, but now there is one, and there will be more.With each of them comes a little more hope that Max’s future will be brighter.
Our family has committed to raising money for research, and in just two years I feel reassured that our efforts are completely worthwhile. Today, we’re asking you to please join us in supporting the research funded by Jesse’s Journey. It’s this research that is giving real hope to families just like us – and kids just like Max.
Kerri and Andrew Sedmihradsky
Max’s mom and dad
photo credit: Cathy Koop
To join Max and his family in supporting research in to Duchenne muscular dystrophy, please donate here