Story
So my story…back in September 2015 I woke up one Sunday morning to find my hearing had gone on my right side. Just short of a month later I learnt that it was due to an acoustic neuroma, a rare brain tumour (even rarer at 35 years young!) Although generally slow growing my tumour was found to be actively growing and required removal. So in April 2017 I had over 9 hour’s brain surgery to remove it. The surgery was complicated by the fact that the tumour had attached itself to my facial nerve.
It has been a really tough journey, mentally and physically but the treatment and care I have received has been phenomenal. Although it isn’t without its faults, I really can’t praise the NHS highly enough. I feel so, so, so lucky to have had a treatment available to me which hasn’t cost me a penny. However, not all are as lucky as me, and this brings me to the reason for fundraising.
My children have had the pleasure of going to nursery with Sebastian and Emil. When Emil was 1 he was diagnosed with Cerebral Palsy, specifically bilateral spastic legs with some difficulties in his arms too. Emil’s type of Cerebral Palsy results in very high muscle tone, which means his leg muscles are incredibly stiff, he quite often struggles to control the movements himself and he is unable to stand or walk unaided. He requires a Kaye walker at present to get around. Day to day activities are completely compromised but Emil is an amazing, smiley little boy who is extremely determined and wants to be involved in everything with family, friends and the dog.
There is a life-changing operation suitable for Emil around the age of 5, called Selective Dorsal Rhizotomy (SDR). This involves cutting the sensory nerves in the lower spine, in turn reducing the abnormal messages Emil currently receives from his sensory nerves. SDR is not currently funded by the NHS but is offered as a “self-funding” programme and the family are therefore responsible for the cost of the surgery and months to years of intensive physiotherapy post-operation. The cost of this is around £40,000.
So…as part of getting back to fighting fit I am putting my running shoes on and hoping to raise some money in the process!! My aim is to run a Park Run every week for a year starting 9th September 2017. Come rain, shine or hangover!
Thank so much for taking the time to read this, and for any donations you are able to give, no matter how small.
Helen x