London Marathon: Indie editor's winging it in memory of young brain tumour victim Edie Wilson
Bishop's Stortford Independent editor Paul Winspear on his £6,000 London Marathon cause...
In November 2011, as a six-year-old pupil at Manor Fields Primary School in Bishop's Stortford, Edie Wilson was diagnosed with a malignant ependymoma tumour close to her brain stem.
Following neurosurgery in Cambridge, mother Cate took Edie to Florida for ten weeks of specialist proton radiotherapy. After the cutting-edge treatment, she was able to resume normal life with her mum, dad Scott and older brother Jacob, now 15.
But after two years in remission, Edie relapsed. So in July 2014 her family set up Edie's Butterfly Appeal to fund ependymoma research.
After further surgery and a return to the USA for more state-of-the-art treatment, the family's hopes were dashed when Edie again relapsed and faced radiotherapy and then palliative chemotherapy.
She was accepted for a clinical trial at London's Royal Marsden Hospital, but a scan in April last year showed the disease was progressing once more and no further treatment options were available.
And so, on May 10 last year, 12 weeks before her 13th birthday, Edie died peacefully in mum Cate's arms, with her beloved pet dog Lily Pickle close by.
"She lived her life like a butterfly – beautiful and vibrant, and not destined to be around for very long."
Those were the words of her mum Cate, who added: "She died as she lived – she always did things on her own terms and did not play by the rulebook."
Edie's legacy is the charity set up in her name.
On Sunday, I will join some 40,000 other runners, joggers and walkers to take part in the 39th Virgin Money London Marathon.
I'll be doing it in support of Edie's Butterfly Appeal, in tribute to the Wilson family – who keep the memory of Edie alive by striving to raise money to give other young ependymoma victims a chance of life – and in memory of Edie.
I have a reputation, certainly among those who have worked with me, of "winging it". So, fittingly, I'll be negotiating the 26.2-mile marathon course in... 5ft wide, pink butterfly wings.
The wings were designed by former Indie cartoonist Ben Hewer, of Stortford, and made magnificently by Emma Cain, of Stansted.
They carry not only the logo of EBA but also those of my marathon sponsors, Enable Independent, the financial life planners in North Street, and MW Fitness, of Wickham Hall, where Mike Williams and his team of trainers – Katy Davies, Mark Thompson and Jo Lang – have helped to get me in a much better shape than I was when I completed the London Marathon in 2012 in 5:27.06.
I have no finish time in mind. I am relishing reliving the superb community atmosphere of the event. The only goals I have are to cross the line like a butterfly, rather than a caterpillar, and to reach my £6,000 fundraising target.
So if you're watching the race on TV on Sunday, keep an eye out for my white vest and pink wings, and maybe pop a few pounds in my online kitty at https://uk.virginmoneygiving.com/PaulWinspear2. In memory of Edie.
How the community has responded to Paul's fundraising
The bulk of the money raised has come from two quiz nights, at Rhodes Arts Complex in February and at the Bishop's Stortford Sports Trust on Thursday (April 25), which were attended by a total of 285 quizzers. As well as hosting the events, Rhodes and the sports trust entered teams for them.
The quiz nights were supported by friends, acquaintances and the following businesses and community groups:
- Bishop's Stortford Satellite Rotary Club
- Brook Cottage Farm Riding School
- CAMM Architects
- Cammas Hall Fruit Farm
- Exidex
- Hanbury Wealth
- Launchpad
- Nockolds
- Pellys
- RecruitAbility
- Tees Law
- The Giving Machine
- Water Lane Theatre Company
Paul has also received donations from Bishop's Stortford Art Society and Stort Chemicals.