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time. “He’s very adaptable and has self-developed skills to aid himself with day-to-day tasks like getting up from the ground or climbing up on to objects. Tommy isn’t showing any physical signs yet, other than slightly enlarged calf muscles, which is a common trait of DMD. They are thankful that Noah’s school is very supportive and are going above and beyond to be prepared for the boys decline in mobility. An MOE funded physio is also working with Noah to help him adapt and will assist with supporting mobility changes along the way. The Fearnley family are sharing their story as part of the Roll 1k for MDA annual appeal, to help spread as much awareness and share their knowledge about neuromuscular conditions. They want to help people understand the challenges people face and how people can help support families like there’s. They are grateful to everyone who ‘rolls’with the campaign and donates to the appeal. They are also keen to raise funds so that MDA can continue to help and support their members, like they’ve been helped. For the Fearnley family, this will be their second time signing up to do the challenge and on the day of the roll they will head into Christchurch city with their homemade kart and scooters, along with any others wishing to join them. Last year the event was within weeks of the boy’s diagnosis, so it was great for them as a family to focus on something positive. “We really enjoyed the atmosphere the MDA community brought,” said Jason. Monique’s brother and MDA’s new ambassador, Callum Hedge, flew to Christchurch to join the family with their roll. “Hopefully he’ll bring a lot more awareness to all neuromuscular conditions. The boys absolutely look up to their uncle. We are so grateful for him and his ability to help the MDA community.” “Thank you for supporting families like ours, we know that your participation in this year’s Roll1k for MDA appeal will help raise awareness so that families get the help they need, sooner”, says Monique. wee little boy, and so because DMD is an X-linked genetic condition, there’s a 50% chance that the baby would be affected too. Thankfully after getting the tests done, our now six-month-old James, did not have DMD”. “If we had not been seen for a possible ADHD diagnosis, I do think we would still not have had the answers we now have, today. And that’s why we are so keen to help bring more awareness to neuromuscular conditions”. “When we received the diagnosis, it was heartbreaking. Noah and Tommy didn’t understand what was going on, but we made sure we answered all their questions about the future without scaring them. It was hard for us as parents as we were aware of the difficulties the future brings for them”, said Jason. To keep the boys’moral up, they remind them how strong their loving hearts are and how amazing they are. “No matter what they lose with the condition, they will never lose their loving hearts and their curious minds. Noah and Tommy still have so much life to live we aren’t going to let DMD take away frommaking memories and getting out in the community”. In need of support, the first people Monique and Jason reached out to was the Muscular Dystrophy Association of New Zealand. “From the beginning, they have been there and continue to support us today. We are extremely grateful to have found this community. Everyone is so understanding and supportive, and through MDA we have found connections we otherwise wouldn’t have”. At this stage in their journey Noah only needs assistance when walking long distances. But this will get worse with READY, SET, ROLL! James, Jason, Noah, Monique and Tommy Fearnley. Continued ... 10 | InTouch SPRING 2023