The story of Nikki
Throughout 2021 I completed 2,215 kilometres (1,376 miles) through walking, running, and hiking, which equates to 10 kilometres for every person estimated to be affected by Fibrous Dysplasia in the UK. Fibrous Dysplasia is a rare bone disease which causes tumours to grow in place of bone and is estimated to occur in 1 out of every 300,000-1,000,000 people. I have been fundraising for the Fibrous Dysplasia Foundation who work to raise awareness and fund research into treatments and cures. With such a rare disease there is no cure and little financial support for research so every single donation helps. https://www.justgiving.com/crowdfunding/nikki-deeley1
Fibrous Dysplasia prevents bone maturing into a solid state, leaving it in a weak, misshapen fibrous stage which is prone to fractures. The illness is exceptionally painful and sadly there is no cure. I first became noticeably ill when I was 13 years old, it took 3 years to find out the cause of my pain and when I was 16 I was diagnosed with Fibrous Dysplasia in my skull after having neurosurgery to perform a biopsy. It subsequently took 4 more years until I had any attempt of treatment for the condition as many doctors have never heard of the illness and didn’t fully understand the condition. The past 11 years have been difficult with constant pain every single day, including chronic migraines. The impact of the pandemic means that doctors appointments have often been cancelled or rearranged and certain treatment options have been withdrawn due to the NHS being over-stretched, so the need for awareness and research funding is more critical than ever.
In order to raise money for the Fibrous Dysplasia Foundation, I have completed my challenge by climbing the three peaks (Scafell, Snowdon and Ben Nevis), climbed an active volcano (Fagradalsfjall), and run multiple races including the Manchester Half Marathon, the Liverpool Santa Dash, the Chase the Sun Tatton 10K and a Grinch 5K in West Kirkby. All of these events have been detailed on my Instagram page @chronicallynikki where I am raising awareness of this condition.