Story
Our Mum was so brave, strong and kind. The most amazing Mum and Wife we could have wished for. And a Grandma that was practically perfect in every way!
She was only in her 40’s when she started to lose her footing with her legs giving way. At first it was thought to be Sciatica, but after many tests some that were incredibly painful, she was diagnosed with IBM.
We soon learnt a lot and it wasn’t what we wanted to hear, Inclusion body Myositis is a rare degenerative muscle disease that has no cure.
Our mum took part in a medical trial, joined forums dedicated to IBM so she could speak to others who were in a similar situation. She always had a positive outlook that a cure could and would be found.
Unfortunately it progressed quicker than anyone expected leaving her to be in a wheelchair full time around 5 years ago. Still she didn’t let it stop her from enjoying life going to concerts, festivals and holidays. Also continuing to work until 2 years ago when covid stopped everything.
We had just started to get back in a normal flow, lots of gigs booked and also a cruise to look forward to. We had just started back with visits to see the consultants that specialise in IBM.
But this horrible disease had been progressing and inevitably it has took her from us far sooner than any of us were ready for. She still had so much life to live
We need more research and awareness of IBM to help stop other people going through this. Due to the lack of knowledge and misdiagnosis people miss out on vital physio that could help muscles and joints keep mobility for longer. Also any funding for potential cures would help give hope to those still living with this disease.
As our mum would sign off
Love, peace, happiness, good health, Marillion, chocolate, puppies & kittens, drug cures for every horrible disease out there) Mr Jiffy, sunshine, London (miss it), beautiful family and topped off with a few (or more) glasses of red wine ... CHEERS!!! 💕🍷🍷🍷
Thank you in advance for your donation, this means a lot to us
Love
Laura, Fran, Sophie and Jiffy xxx
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