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Among them is Claire Wright, from Sutton, near Ely, her sister Katie Roe, niece Hallie, friend Claire Lewis and her friend’s daughter Jasmine.
Claire is calling for more to join them, having shared how EACH supported her and husband Bob during their most heartbreaking of journeys:
“I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them.
“I often said the words ‘I hope for’, but until Jacob I didn’t realise that hope’s not something you wish for, it’s something that’s always there and is magnified by the love of others.
“Jacob was a beautiful 7lb 8oz baby boy and completed our family. I had dreams about life as a mother, but Jacob took me down a different path - one I wouldn’t have chosen, but one I’m so privileged to have been on.
“Jacob was born in December 2010. He had a cataract and hearing loss. I always knew Jacob wasn’t an average baby - I don’t like the word normal - and as he grew I voiced my concerns about slow development, sleepiness and slow feeding to the professionals, but was told not to worry.
“At nine months he had his first seizure and they increased in frequency. At 14 months, doctors indicated he had mitochondrial disease, with no treatment or cure. We knew Jacob was going to die and there was nothing we could do.
“We were referred to EACH at Milton. Our friends had been involved with them and knew they could help. In March, Jacob was admitted to the paediatric intensive care unit at Addenbrooke’s Hospital in Cambridge, where we were told he had months, not years, left with us.
“We arrived at the hospice feeling scared and alone. We had so many questions: How did we arrange a funeral? Would he be left alone? They answered them all and more. On the way home we saw a rainbow. Even in this dark place there was still hope.
“On 20 April, 2012, Jacob died in my arms very peacefully, with his daddy holding his hand. We drove him to the hospice where he spent 10 days until his funeral. The staff looked after us, helped us plan his funeral and say goodbye. He slept in a bed with his teddies, duvet and pillow. The staff played him nursery rhymes and talked to him every day.
“EACH cared for the whole family, especially my niece and nephew. My nephew visited Jacob in his room and said ‘It looks like he’s asleep’. He cuddled him and asked me to read them a story. Afterwards he asked ‘Is it always this lovely when someone dies?’
“We went to a memory day and the children got another opportunity to see death isn’t scary, and there’s always hope that we’ll be happy and can remember Jacob with joy.
“Without Jacob and the hospice, I’m not sure our family would have the real hope we all do. I can’t imagine what it would have been like. Nobody should have to. Every family should be offered the support we were.”
Today, EACH cares for 116 children and young people with life-threatening conditions across Cambridgeshire, including 12 in and around Huntingdon. On top of that, it offers specialist support to 113 family members. The charity helps similar numbers across Essex, Norfolk and Suffolk, requiring some £5 million a year from fundraising.
EACH’s Inflatable Colour Dash at Huntingdon Racecourse will take place on Sunday, 10 June, with runners to set off in half-hourly waves between 11am and 3pm.
Claire, 44, who also has a daughter, Charlotte, one, said: “We’re all really excited to be taking part in this new event. It’s going to be so much fun and at the same time I know from benefiting from the care EACH provides that every single person there on the day will be giving hope to families going through the unimaginable, and that is an amazing thing to do.”
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:
|
Ticket |
Normal price |
|
Adult |
£25 |
|
Teen (13-17) |
£20 |
|
Child (5-12) |
£15 |
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.