Smiley Miley is a family fund set up by Katie and Christopher after their daughter, Miley, was diagnosed with Ullrich congenital muscular dystrophy in 2024. Miley wakes up with a smile on her face every day, earning her the nickname Smiley Miley, amongst family and friends. She loves playing with the family’s dog, Nico. The two are inseparable together.
Smiley Miley Family Fund
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 she has Ullrich congenital muscular dystrophy.
“Her dad and I had no idea what this meant for our daughter at first, but we know now the tough road that lies ahead.”
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 has 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.
Miley is such a happy little girl. She is such a strong, smiley wee thing and just seems to take everything in her stride. She is a little bit slower at reaching motor milestones than most. However, she doesn’t let this stop her. She started sitting on her own at nine months old, and more since turning one, is slowly finding the ability to stand on her own holding onto the sofa!
“My daughter 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.”
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. We would like to raise money to help the charity support others in a similar position.
Smiley Miley’s Family Fund has chosen to put 20 percent of the funds they raise towards Miley’s future welfare needs. They send the remaining 80 percent to Muscular Dystrophy UK to fund life changing research into muscle wasting and weakening conditions in Scotland.
