03 February 2022
I am fundraising for Nerve Tumours UK on behalf of my niece, Sophie, and her 2 year old daughter, Lexie, who both have NF2.
NF2 is a rare genetic condition which causes tumours to grow on the nerves in the brain and spine and other parts of the body. Although these tumours are usually benign, they are not harmless. They will typically affect primarily the auditory nerves (as well as others) and most people with NF2 will suffer partial or total hearing loss as well as having problems with balance. The condition can be life-limiting and also sometimes causes loss of sight and mobility. There is currently no cure for NF2. The tumours can only be managed by often aggressive treatments such as surgical removal, chemotherapy and radiotherapy. The damage to the nerves caused by the tumours and their management is permanent and can be life-changing.
Sophie was diagnosed with the condition over 8 years ago in her mid-teens and has since lost her hearing completely. She has undergone several surgeries to remove/shrink the tumours as well as radiotherapy. She currently endures chemotherapy every three weeks.
She is the bravest person I know and I am constantly bowled over by her courage, her sunny personality and her fierce determination to be the fantastic mum and role model to her young daughter that she is.
Sophie has a great relationship with her Specialist Nurse, Helen, who has been absolutely amazing in her support for those with NF. She’s always there for Sophie with advice and help whenever she has needed it.
I’ve chosen to support NTUK with my challenge because I think that the work they do is fantastic, especially with regards to raising awareness of these conditions and providing support to patients and their families.
So many people, myself included, had never heard of Neurofibromatosis until someone they know or love is diagnosed with the condition. Support for those with NF is SO important – in Sophie’s case, she needs someone with her pretty much whenever she leaves the house because of her hearing loss and especially when she attends her numerous medical appointments and check-ups. She is learning to lipread (and is doing really well) but she struggles to understand people she doesn’t know well and the Covid pandemic over the past couple of years with people wearing masks has sometimes made even visits to the shops impossible for her.
In October last year I was so inspired by the stories and courage of many of the participants in the Virgin Money London Marathon that I decided, on impulse, to enter the ballot for the 2022 London Marathon myself.
I aim to raise as much money as possible for Nerve Tumours UK - a charity that supports those with NF1, NF2 and other nerve tumour conditions. The only problem is that I am rather overweight!
Therefore my goal (and my pledge) is twofold - one, to lose at least 50% of my starting total bodyweight (19 stone 4.5 pounds) and to get myself fit to run the marathon in October 2022 and two, to actually run the marathon!
I have just under 10 stone to lose and I haven’t run anywhere in more years than I care to remember. So, at age 51, this will be quite the challenge of my life! But I am determined to succeed. If I am not lucky enough to win a place in the marathon by ballot then I will either apply for a charity place sponsored directly by Nerve Tumours UK or I will sign up to one of the formal virtual London Marathon challenges to be held on the same day as the actual event. In any event I will be taking part in the marathon in one form or another in October.