Hi everyone,

As most of yous will know by now that our little girl Miley was diagnosed with Ulrichs congenital muscular dystrophy back in September 2023 she was only just 4 months old, this condition makes Miley muscles weak and affects her ability to move ie pull herself up or even sit up from lying down or even walk etc, it also caused her spine to curve which affects her respiratory system where one of her lungs is compressed making it difficult to work at full capacity, her condition also affects her ability eat and drink making it difficult to get the correct nutrients to gain weight however she is NG tube feed to help her obtain these nutrients.

Despite all of this Miley started walking with the support of a walking frame at Christmas however she does tire quickly but this doesn't stop her giving it her all and will walk unaided short distances around the house.

She has constant spinal reviews and wears a brace to maintain her scoliosis however she will probably need surgery to correct her spine.

Miley is on the waiting list to get a peg tube Which should free her up during the day to eat and we can top her up during the night.

It is a constant worry with her being suseptable to chest infections and in January she was admitted to hospital with RSV and her lung collapsed however she did recover quite quickly and was back running around but it's always on the back of our minds

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!