Phoebe was diagnosed in December 2023, at the age of 5, with Facioscapulohumeral Dystrophy (FSHD). After numerous appointments, travelling from Shetland to mainland Scotland and undergoing various tests, Phoebe was finally diagnosed.
Phenomenal Phoebe Family Fund

From a young age, Phoebe displayed limited facial muscle movement, which prompted the process of her diagnosis. This lack of muscle meant she was unable to show facial expressions—a key part of communication for any individual.
Phoebe also faces challenges due to winged scapula and weakness in her arms and legs, which lead to frequent falls and discomfort. Despite these difficulties, Phoebe continues to be an extraordinary young girl who doesn’t let her diagnosis prevent her from striving to achieve everything she can.
Phoebe is a happy child, always eager for fun and laughter. Although she cannot show her happiness facially, we know she feels it, and her resilience is inspiring. We are incredibly proud of how she has handled every challenge with grace and strength, proud to be herself.
She is a determined little girl who tries her best to keep up with her friends and peers, although it can be a struggle. Phoebe loves spending time with friends, playing, crafting, and when she’s feeling tired or achy, she enjoys curling up with a blanket and watching TV.
Phoebe has a caring little brother, Brodie, who is very protective of her and always shows kindness and love. Together as a family, we are committed to helping Phoebe pursue her dreams and achieve her goals. With the support of charities, medical specialists, and our amazing network of family and friends, we are determined to help her on this journey.
“You can feel quite helpless as a parent when your child is diagnosed with a muscle wasting condition. Fundraising was a way we could make a difference and do something to help the community.”
While it is devastating to learn that your child has a progressive muscle wasting condition, we focus on the things we can control. Our hope is that Phoebe’s future is bright, and that she will have all the tools and support she needs to make the most of life.