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Sharon’s Story

18 July 2019

Sharon's Story

Sharon has recently applied to run the London Marathon for Nerve Tumours UK, here she tells us a bit more about her families experiences with NF and why she wants to run for Nerve Tumours UK:

Our family’s lives have been touched and continue to be affected by NF1, something we have only recently really started to understand. My grandad died with complications from Neurofibromatosis. My dad suffered with tumours and scoliosis and we never really understood the connection. My younger brother had severe scoliosis from a very young age and had surgery to correct his spine. He has enormous tumours inside his body and other symptoms which he has to deal with on a daily basis.  Our own GP and hospital never made the connection and it wasn’t until my niece was born and subsequently had tests, that my brother was finally diagnosed with the condition over 30 years after his scoliosis was operated on. My niece has been diagnosed with NF1 and has autism as well, and we as a family are trying to learn as much as we can about the condition and want to spread awareness. Who knows, it may have helped us many years ago had we understood the symptoms.  I want to help, albeit only a drop in the ocean, to spread and raise awareness.

I lost my youngest brother last year to cancer, he too had symptoms of Neurofibromatosis. He had a rare lung cancer and it is thought that a nerve tumour turned cancerous after an operation on something which not connected. My brother ran a half marathon for charity and after we lost him, I decided to start running having never done more than the occasional park run, to raise money in his memory for a local charity, The Big C. I have blogged about my running and grief journey, “Running with Grief, The Long Run”, and I would love nothing more than being able to continue this blog and write about my journey on the “Longer Run” and to raise money for a charity which is vital in helping and supporting families in the same positon as us.

"I am dedicated in raising as much money as I can and my employer is extremely supportive and doubles whatever I raise. I intend to raise funds by doing dress down days at work, cake bakes, raffles (all the usual stuff!), my running club also make charitable donations and I will be selling stuff on Ebay to add to the “pot” too. I am working on coming up with some other ingenious ways to raise funds too."

– Sharon

We at Nerve Tumours UK would like to thank Sharon for sharing her and her families inspiring story with us and will support you at the Great North Run and hope to see you at next year's Marathon Sharon! 😊