Why EACH Colour Dash has special meaning for one family

The highly anticipated Inflatable Colour Dash at Huntingdon Racecourse will be great fun for all involved, but it will mean more to one group of family and friends than most.

Sharon and Andrew Johnson, from Soham, will lead a 32-strong team running in memory of their daughter, Lucy, who died on 1 April this year, aged just 12.

Lucy’s final days were spent at East Anglia’s Children’s Hospices (EACH) in Milton. EACH is organising the Inflatable Colour Dash and there has been an outpouring of support for Sharon, Andrew and team, with their initial sponsorship target of £3,000 not only having been exceeded, but almost doubled.

Lucy lived with Lennox-Gastaut Syndrome, a rare and severe type of epilepsy, had global developmental delay and was registered blind.

She suffered a seizure at 12 weeks old, initially thought to have been brought on by a temperature, but after another 14 in 24 hours she was diagnosed with epilepsy. The specific type was identified a year later following a series of further seizures.

She and her family were introduced to EACH and Lucy went on to benefit from hydrotherapy, music therapy and short breaks in Milton, giving her parents, sister Katie, 14, and twin brother Liam, some much-needed respite.

As well as help with Lucy’s care needs, the family have been fortunate enough to benefit from special holidays and days out. Last year, Lucy got to present a posy to the Duchess of Cornwall at Newmarket Racecourse.

Close family friend Lisa Yearn takes up the story: “Sadly, in March, Lucy became incredibly unwell and was in hospital. She went to the hospice to spend what time she had left in a comfortable environment with her family. The hospice was actually closed for a week at the time, but there was no hesitation to open it just for her.

“The wonderful staff, some of whom have known Lucy and her family for 10 years, came in and took over the responsibility of meeting Lucy’s medical and physical needs, so Sharon and Andrew could focus on being mum and dad. The emotional support the family have had is overwhelming and without the wonderful staff they wouldn’t be coping at such a difficult time.

“Not only did the hospice open its doors to Lucy, her mum, dad, brother and sister so that they could all stay onsite, they welcomed her nannies, grandads, aunties, uncles, cousins and friends. On some days it was a madhouse, with over 20 visitors. Each visitor was greeted by the staff with a caring smile and a massive welcome, even if they were visitor number 20. They all had drinks made and meals cooked for them, too.

“Sadly, our gorgeous little Princess Lucy gained her angel wings and Heaven gained the strongest little angel. We cannot thank Milton hospice enough for everything they’ve done for Lucy and her family.

“After walking in to the hospice and seeing how they looked after our friends and their daughter, we all felt we wanted to do something to raise money. We spotted the Inflatable Colour Dash and thought being covered in paint whilst clambering over obstacles alongside a bunch of friends, having a laugh, was the perfect way.”

There are over 370 people set to take part in the Inflatable Colour Dash. It will happen on Sunday, 10 June, with runners to set off in half-hourly waves between 11am and 3pm.

EACH has been hosting its Colour Dash series across the region since 2014. Colour Dashes are five-kilometre (3.1-mile) fun runs – the fun aspect being that participants are showered with clouds of coloured powder paint as they run. There will be extra added fun at EACH’s first in Huntingdon, though, with the course to feature giant inflatable obstacles.

Polly West, EACH Cambridgeshire Community Fundraiser, said: “The inflatables are there to be enjoyed, so there’s no race element. Come along and run, jog or walk, or even bounce your way around the course, and be ready as our paint pirates shower you with coloured powder - creating truly impressive multi-coloured results!”

Pricing is as follows:

Included in the price of tickets are a warm up, paint packet, T-shirt, medal and water.

For more information about and to book your place in EACH’s Inflatable Colour Dash, visit www.each.org.uk/colour-dashes. Alternatively, those who do not wish to take part can volunteer. EACH is looking for a team of 30 volunteers to throw paint, help set up and pack away, register runners, marshal the course, hand out water and more. Anyone interested should contact Ellen Bing, EACH Cambridgeshire Fundraising Assistant, at ellen.bing@each.org.uk or on 01223 204916.

To sponsor Lucy’s family and friends, visit www.justgiving.com/fundraising/l-yearn.