“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.
Nikita and Alannah, and their other two sisters, Natasha and Alisha remember growing up aware that their mum had muscular dystrophy but not really knowing 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 was not a shock and it did not 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.
Nikita began fundraising for Muscular Dystrophy UK following Sandra’s passing and to date has organised various seasonal raffles at work and run in both the London Marathon and Great North Run in 2019.
She has plans to do the Great North Run again in 2020 along with a large group of friends and the family are also planning on holding fashion shows and doing skydives to help raise funds.
“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”.
Net proceeds from this family's fundraising will be split 80/20 between MDUK's research and to help support the family with future welfare needs.