Hello Everyone,

Time to get my walking boots back on again for the kiktwalk, this year me and my team will be taking on the Edinburgh mighty stride to raise money for muscular dystrophy UK including smiley Mileys fund.

As most of you will know our little girl Miley was diagnosed with Ulrichs Congenital Muscular Dystrophy in September 2023 - she was just 4 months old. Mileys condition makes her muscles weak and affects her ability to move - she is unable to pull herself up or go from prone to upright. It has also caused a curvature in her spine (scoliosis) which affects her respiratory system. One of her lungs is compressed, making it difficult to work at full capacity. Mileys condition also affects her ability eat and drink making it difficult to get the correct nutrients to gain weight. Miley is currently fed through a nasal gastric tube and is on the waiting list to have a peg tube installed.

Despite all of this Miley started walking with the support of a walking frame around Christmas 2024. Miley can now walk unaided for short distances, although she does require constant supervision as it is very easy for her to fall over.

Miley has constant spinal reviews, every 4 months. She wears a brace to maintain her scoliosis, however she will probably need surgery to correct her spine when she is old enough.

Chest infections are a particular worry for Miley. Due to her lung being compressed, she is unlikely to be able to fight any chest infection on her own. In January, she was admitted to hospital with RSV and her lung collapsed. After a short spell in ICU with the help of CPAP, oxygen and high flow she made a steady recovery.

Muscles.

We use them to move.

Walk, eat, smile, cry.

Pump blood around our bodies.

To breathe in and out.

Our muscles matter.

By fundraising for Muscular Dystrophy UK, I’m helping to fund world-class research into effective treatments, and life changing support for the 110,000 people in the UK living with a muscle-wasting condition.

All donations and support are greatly appreciated. Thank you!