On 30th June 2023 my sister Elizabeth and I are joining #TeamOrange jumpers and raising monies for Muscular Dystrophy UK

Muscular Dystrophy UK is the charity for the 70,000 people living with muscle-wasting conditions in the UK. We bring together people affected by more than 60 rare and very rare progressive muscle-weakening and wasting conditions.

My lovely husband Makhan has FSH muscular dystrophy and despite the huge impact the condition has had on his life he is positive and resilient. I will be thinking of him when I take the leap!

Raising money will help towards enabling life changing research into cures and treatments, and help us provide practical and emotional support

Please help me to reach my fundraising target, Thank you

This is Makhan's story:-

I was 16 years old and was heating some baked beans on the hob when my brother noticed my shoulder blades prominently protruding from my t shirt, I never thought anything of it. However my dad, a wise man, arranged a doctors appointment for me, the doctor then referred me to a specialist. After some tests and discussions with the specialist I was referred to a neurological hospital in London for further tests, I stayed there for 5 days and nights. After a muscle biopsy it was confirmed that I had FSHD. I never thought anything about this as it did not affect my life, I continued to play sports, football, cricket, snooker and led a normal life. I couldn’t lift both of my arms above my head and couldn’t reach for items from high shelves but these were not major issues. I noticed older photographs of myself whereby some of the muscles in my face were not like others, for example I could not lift the side of mouth or shut my eyes fully but again never thought anything of it.

At the age of 30 I began tripping over for what appeared no apparent reason. After a few bloody knees and hands I visited a physiotherapist who suggested some exercises as it was noted I had an indentation on my left shin. The exercises made no difference so I had further specialist checks which identified I had a dropped foot caused by FSHD, the indentation in my leg was evidence of the muscle disappearing. I was unable to lift my foot when I walked, it felt as if my foot was nailed to the ground which resulted in the falls. I tried a few different foot up devices and found one which worked very well which significantly reduced the number of falls I was experiencing, however, they would still occur occasionally. At this point I stopped playing football and cricket but was still able to walk long distances, exercise and enjoy what most people did. I continued to listen to live music and stand throughout the gigs which I loved, I even attended festivals and camped out throughout.

When I was 33 years old I became aware that I could not weight bear on my left leg therefore walking stairs was becoming more difficult but I still managed as my right leg was still strong. A few years later my right foot dropped therefore I had to wear a foot up splint but this worked just as well as on my left foot. This gradual deterioration of muscle strength was consistent with FSHD. Over the next few years the muscles in my biceps significantly reduced and then the strength in my right leg began to reduce therefore I had to make decisions about what would be safe to me to accomplish. With the loving support of my wife, children, family and friends we had a stairlift installed at home, I purchased a funky mobility scooter (which has a Wu Tang Clan sticker on it) to help travelling longer distances that ordinarily I could have walked. Although every day brings its challenges I am always positive about what I can do rather than what I cannot, I love still going to gigs, watching snooker and football rather than playing now and taking my children (on mine and their scooters) to and from school. I still drive and have a car with hand controls. FHSD does not define me but I have to be aware of it as it impacts every part of my daily life but with the love and support of my family and friends every challenge can be overcome. Please support further research in FSHD as there is no current cure or method of reducing the deterioration of muscle strength.