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AUTUMN 2026 InTouch | 9 DEFYING THE ODDS While hematology specialists have said that chemotherapy would likely be used if the condition returned, Mark remains confident in the reset his body experienced. Fighting the System and Funding His Own Diagnosis Mark quickly learned that rare diseases don’t move quickly through public health systems. Triage systems prioritise visible urgency. He was rated “semi-urgent” and told he would wait three to four months for specialist review. He refused to accept that. He phoned persistently. He advocated relentlessly. He engaged specialists, including Peter Wright, and called a nurse daily until he secured an appointment. Ultimately, he funded his own diagnostic process, spending $40,000 to get answers. Research suggested he might deteriorate too much to qualify for a stem cell transplant. Patients need to be strong enough to survive the procedure. Waiting could have cost him the opportunity. Once diagnosed, the health system mobilised effectively. Support wrapped around him. But, he says, the real challenge is getting to that diagnosis in the first place. “There needs to be more emphasis on diagnosis. Once they know what you’ve got, they can help.” Strength Through Support Mark credits his survival not just to medicine but to people. His family stood behind him. His Fieldworker, Debbie Hoskins, provided vital support. He insists no one should try to face a battle like this alone. He also took ownership of his condition. He kept meticulous notes – every medical report, every specialist opinion, every research paper. At one point, he had compiled notes on the 74 documented cases worldwide. “I became the world’s expert in my condition,” he says. “Because I lived it — and I’m alive to tell the story.” Writing as a Lifeline After his stem cell transplant, Mark began writing. Initially, it was a way to process what he had endured. The confrontation with mortality, the fear, the uncertainty. Encouraged by others, and supported closely by fellow member, writer and Historian, Michelle Smith, the writing became cathartic. His book, ‘Mark My Words’, evolved into more than a memoir. It became documentation and a record of treatments, side effects, decisions, and outcomes that doctors themselves had not formally published. He wanted others facing similar diagnoses to have knowledge. To know survival was possible. To understand the pathways. Writing gave him control at a time when much felt uncontrollable. Life After the Storm Today, Mark still carries muscle damage from both the disease and the treatments. But he walks independently. His breathing and heart function are strong. There are no mobility aids. He is retired now, choosing health over workload stress, but life, he says, “is fantastic.” Doctors use the word remission. Mark prefers something stronger. He focused not on the outcome but on the journey ahead. He never accepted the idea that the end was near. “It’s gone until it’s not.” For a condition documented in fewer than 200 cases worldwide, his story stands as both medical rarity and powerful testimony: sometimes survival depends as much on persistence and belief as it does on treatment. To read more about Mark’s incredible story and journey with Nemaline Myopathy, grab your copy of his book today. If you would like to pre-order a copy, please contact Mark (putting In Touch in the subject line): denmark1@xtra.co.nz Mark is offering In Touch readers a special price of $20 per copy (normally $30). Mark’s book, titled ‘Mark My Words’, is about to be published!