VIDEO: A heartbroken mum has been overwhelmed by the support for her four-year-old son after he was diagnosed with a rare muscle waisting disease, as appeal fund donations topped £1,000 in less than 24 hours.
Single mum Claire Barker from Latchford was left devastated after her only child George was diagnosed with one of the two types of Myotonic Dystrophy – an inherited type of muscular dystrophy that affects the muscles and other body systems.
Although George has only just been diagnosed, his mum was anxious about how she would support her child, as the condition is progressive. Heartbroken, Claire has been “unable to sleep a night with worry”.
She had concerns such as being able to afford a heart sensor watch, different types of emotional and physical therapy and any equipment that George may need in the future.
A go fund me page was set up to support George and his mum on their journey and to Claire’s amazement over £1000 was raised in under 24 hours! She can now afford to get the heart sensor watch she dreamed of. She will now be able to rest knowing she will be alerted to any changes in George’s heart rhythms, which has been a huge cause of anxiety for her and caused sleepless nights.
There’s still work to do as they need to prepare for the future, as people with MD1 have progressive muscle wasting and weakness. The muscle wasting and weakness develop in their lower legs, hands, neck, and face. Other symptoms include fatigue, muscle pain, difficulty swallowing, clouding of the lens in their eyes (cataracts), and irregularities in the electrical control of their heartbeat.
There is currently no cure or specific treatment for myotonic dystrophy. Treatment is aimed at managing symptoms of the disease so physical and emotional therapy will be vital for George.
George has released a thank you video for all the donations that he has received.
Claire is so thankful for everyone’s support so far, with the appeal fund reaching £1,070. The next goal is to reach £2000 so please donate if you can.
https://www.gofundme.com/f/support-for-george-myotonic-dystophy
