Myself and my bestie are doing the kilt wall on the 28th of april to raise money for muscular dystrophy uk in honour of my little girl 🩷 and throughout the year myself and Christopher and family will be doing various fundraising events to help raise further

This is Miley's Story

Miley was diagnosed with Ullrich congenital muscular dystrophy which causes muscle weakness causes joints in her hand and feet to have bendiness while her elbows hips knee joint have contractures this has also caused a scoliosis (curve on her spine). Due to this she has respiratory weaknesses causing her to breathe faster than usual. Depending on the severity of her condition - as it varies from person to person some children learn to walk but may lose this ability over time however some may only walk on their knees or not at all. Over time the strength of her respiratory system will be monitored as she may need additional support at night via the use of a ventilator. This can also affective feeding causing prolonged mealtimes and failure to gain weight normally and in some causes a gastro tube is required to ensure they receive adequate level of nutrition.

Miley was diagnosed at just 4 months old from birth we noticed the floppiness in her hand and feet, she was fast breathing which lead to her being readmitted to hospital nearly a week after she was born where they done genetics testing, carried out x-ray and MRI scans to confirm her condition she's was immediately referred to physiotherapy to help strengthen the muscles and help loosen the contractures, she was put on high energy milk to help her gain weight, however she is now starting on pureed solids so fingers crossed no gastro tube will be required, she's had sleep studies to monitor her breathing, which will continue every 6 months, numerous members of the medical team including Occupational Therapist, speech and language therapist, spinal surgeons/clinics, respiratory, orthopaedics, orthotics and the neuromuscular team have been involved and have been so supportive throughout and they will all continue to monitor her progress. Currently Miley has been provided a special supportive wheelchair pram to keep her as straight and comfortable as possible as well as this a sleep system has been provided which also supports this, next she will be fitted with a spinal brace to hopefully help correct her scoliosis. Otherwise corrective surgery will be required later on so fingers crossed no surgery required.

We still have a big journey ahead of us so anything you can do to help support not only our little Miley but other families with similar conditions

Muscular dystrophy UK which is the charity for 111,000 people living with muscle-wasting conditions. They are making a difference today, providing vital information and support to help people live as independently as possible. They are making a difference for tomorrow, accelerating progress in research and driving the campaign for access to emerging treatments

Update on miley's journey, a few weeks ago now she was fitted with her spinal brace she has to wear this for at least 20 hours a day we are currently building the time up, she is doing so well and taking everything in her stride however last week it was decided she is now to be fitted with a Ng tube as she has not been gaining weight so to help her get the nutrients she needs to grow stronger she will be getting additional support through the Ng tube fingers crossed this will only be temporary.

We would like to thank everyone for there support, we really appreciate it.