Hello Everyone,

Time to get our walking shoes back on again for the kiltwalk !!!! This year we will be taking on the Edinburgh mighty stride to raise money for muscular dystrophy UK including smiley Mileys fund.

As everyone knows; my best friend Katie and her partner Christopher became first time parents to our little Smiley Miley in 2023. She was diagnosed with Ulrichs congenital muscular dystrophy at just 4 months old and at the time the family had no idea what this meant for Miley.

The last year alone has been a whirlwind of highs and lows and the family have faced many challenges; but against all odds this year Miley walked on her own!!!!. After being told that there would be a possibility of her never being able to walk, this is a HUGE milestone.

As Miley gets older and her muscles weaken, there is a chance that she will loose the ability to walk. She also has a scoliosis which affects her breathing and makes her more susceptible to chest infections. Unfortunately last year in March/April Miley ended up in the hospital twice with a chest infection and ended up in the ICU on high flow oxygen. In January this year she ended up in hospital with RSV and as a result of this it caused her lung to collapse. She was sent to PICU and was put on cpap to help reinflate her lung. Again, our little fighter made a quick recovery.

Her condition has made it difficult to control her weight and due to this she's in fed through a nasal gastric tube and her weight is monitored. But nothing stops our smiley Miley and she makes us so proud with her determination to keep pushing all boundaries.

The family continue to work closely with physio building on her strengths and weaknesses and constantly doing exercises to help build muscle strength. We are all in awe of her every single day.

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!