BY JON REY-HASTIE
I first discovered Mark when planning my documentary A Life Worth Living: Pushing the Limits of Duchenne. I had the seed of an idea on a cruise ship sailing back from New York, reflecting on what I wanted to do next after my latest adventure. Earlier that year I had heard about some older adults with DMD, which gave me incredible hope for the future and a new perspective on my opportunities.
Learning about Mark living independently, 40 years old at the time and with a tracheostomy, helped me to solidify my idea for the film. A road trip, to meet older adults and share their stories. It was a way for me to learn about opportunities I had, and share that feeling of hope with others in a similar situation.
It’s no exaggeration to say that meeting Mark changed my life. The journey to Scotland was long, but so rewarding. Here was an adult with DMD living a fantastic life, an independent life, and a longer life than I expected, even with the progression of DMD. As I left education and support dropped away, Mark was a beacon of light that gave me a new direction.
After the film, Mark and I joined the steering group for an Action Duchenne project called Takin Charge. There we cemented our friendship and found we had much in common. We had a similar outlook and aspirations that life with DMD didn’t need to be a miserable affair. With the right information and support to handle the challenges of DMD, a happy, positive, productive life was possible. And we had a similar passion to pass on the benefit of our learning and experience to others.
There was a clear need for an organisation of adults with DMD. Yet without the bedrock of friendship and shared goals between Mark and myself, it wouldn’t have happened. No single person can do this work effectively by themselves. It needed to be a shared undertaking.
Mark and I set Up DMD Pathfinders in 2014, along with Robert Watson, who is now sadly no longer with us. The three of us made a good team. Starting from nothing except for a joint commitment and an initial investment of £1,000 each from Mark and myself, Pathfinders took some time to get going. However I believe our joint presence in the community was a powerful force from the beginning. This presence inspired the support we needed to establish ourselves as an independent charity.
There have been ups and downs, and times when each of us needed to step back a little. Having that joint commitment meant we could support each other when necessary, to keep moving forward in our goal. Without the two of us, Pathfinders could not have succeeded.
As Pathfinders Neuromuscular Alliance moves into a new era, it has taken on a life and identity that Mark and I always hoped for. We considered Pathfinders would be a success when we could both step back and know that the next generation would continue our work. It feels like we have now reached that point and so it makes sense for Mark to hand over the reins. I’m confident that with our new team, we have momentum and stability to succeed. And I’ve still got a few years in me yet!
Mark will always be an inspiration to others with DMD because of what he has achieved. I know he’ll continue to be involved in our work. He has contributed so much and truly reshaped the DMD community for the benefit of everyone. He’s certainly earned the time to focus on his own hobbies, and I know we will stay great friends!
Thank You Mark – for everything!