The Family Fund, Succeeding for Sandra, was set up in September 2019 in memory of Nikita Ellithorn’s mum Sandra and in support for Nikita’s younger sister Alannah.
Succeeding for Sandra
Our mum, Sandra, was diagnosed in her thirties and was the first known person in our family to be diagnosed with Facioscapulohumeral muscular dystrophy (FSHD). Her first symptoms, which led to diagnosis, were a restriction in the movement of her arm. Alannah, who was formally diagnosed at the age of fourteen, also had this same issue and both were unable to raise their arms above their heads. Mum already knew Alannah had the same condition so for Alannah it was a quick diagnosis as the doctors just compared her test results to our mum’s results.
Both Sandra and Alannah had a Scapular Fixation (for Alannah this unfortunately was unsuccessful and caused more issues) and Alannah currently receives regular physiotherapy and loves going to music concerts, watching sports and is an avid reader.
We remember growing up knowing that mum had muscular dystrophy, but just not really understanding what it was.
“She was a very strong woman who was bringing up me and my three sisters so she just got on with life, despite the issues she faced with her condition. I feel it never affected us as a family.”
When Alannah was diagnosed, it wasn’t a shock and it didn’t really change things – through our eyes she just had what mum had. As I got older mum struggled more with steps and standing up off the floor, getting out of bed etc. Again, she laughed it off with us and she just had her ways around these things so it was the normal to us – something I admire her so much for now looking back.
Sadly we lost our mum in 2017 and so our Family Fund has been set up in her memory to help fund research into all types of muscular dystrophy and so that we can help to fund equipment that will benefit our sister Alannah when needed. We all want to continue raising money and awareness for the charity and also to help improve Alannah’s independence in the future. Having our own Family Fund will be a great way of us achieving these goals.
To date I’ve organised various seasonal raffles at work, fashion shows, ran in both the London Marathon and Great North Run in 2019, and organised group sky dives. I’m also running the London marathon again in 2027 as my mum would have turned 60 this year.
Net proceeds from Succeeding for Sandra will be split 80% to Muscular Dystrophy UK’s research and 20% support the family’s welfare needs.
