From birth, we noticed that the joints of Miley’s hands and feet were extremely ‘floppy’ and at just four months old, genetic testing confirmed that she has Ullrich congenital muscular dystrophy.
Everyone has been so supportive
Christopher and I didn’t know what this meant for our daughter, but after looking into the condition, we quickly understood that due to her muscle weakness, Miley is unlikely to ever walk, or if she does, we’re unsure how long for. She is under the care of the neuromuscular team, but we’ve met with lots of different specialist teams – spinal, respiratory, physio, and everyone has been so supportive.
Miley’s condition also means that she has a curvature on her spine and suffers from respiratory muscle weakness causing her to breathe faster than usual. In future, she may require night-time ventilation but for now, she undergoes regular sleep studies to monitor her breathing. Miley has been fitted with a spinal brace and, more recently, a nasogastric (Ng) tube to help her gain weight. She is such a strong, smiley wee girl and just seems to take everything in her stride.
Miley’s Magical March
Miley motivates and inspires me every day. I’m so proud of her and the way she adapts to all the changes that come her way. So, I decided to take on the Glasgow Kiltwalk challenge for her, to help increase awareness of muscle wasting conditions and raise money for Muscular Dystrophy UK. My best friend, Amy, is doing it with me and we’re calling it ‘Miley’s Magical March’.
Since Miley was diagnosed, everyone we’ve met and spoken to about her condition has been so helpful. We still have a big journey ahead of us but it’s nice to know that we’re not alone, and we want to give something back so that Muscular Dystrophy UK can be there for other families like ours.
Explaining why it’s important to her to take on this challenge and walk alongside her best friend, Amy Stevens said: “I really didn’t know much about muscular dystrophy before Miley was born and diagnosed at a very young age. But now I do, and Muscular Dystrophy UK have been absolutely amazing. I know that my bestie and her family don’t have a smooth road ahead, but with the right type of support it’s going to be a lot easier, and I want to do everything I can so that they, and other families, can continue to get the help and support they need.”
Family fundraising
Following Katie and Amy’s Kiltwalk challenge, Christopher’s sister Aimee is planning a charity Race Night in May, with a raffle and tombola, to raise further funds for Muscular Dystrophy UK.
Follow Team Miley’s journey at justgiving.com/team/teammiley
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