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Bereaved mum from Cambridgeshire takes on Pier to Pier walk for Each in memory of little Jacob

When Claire Wright takes on the 32-mile Pier to Pier walk in aid of East Anglia’s Children’s Hospices (Each), she will remember the incredible support she received there when her son died, aged just 16 months.

Jacob had mitochondrial disease and there was no cure or treatment. He died at Addenbrooke’s Hospital, in Cambridge.

Claire Wright and daughter Charlotte and a photograph of Jacob at their home. Picture: Richard Marsham
Claire Wright and daughter Charlotte and a photograph of Jacob at their home. Picture: Richard Marsham

Claire and her husband, Bob, were supported through the darkest of times by the Each hospice in Milton.

And now Claire will say thank you by raising money at the sponsored walk along the beautiful Norfolk Coastal Path from Cromer to Great Yarmouth on June 25.

“The staff at the hospice were, and continue to be, truly amazing people, helping others deal with an unimaginably hard and painful time in their lives,” said Claire.

When Jacob was born in December 2010, he had health complications from the outset, including a cataract in one eye and mild hearing problems. The issues intensified and he had a form of “uncontrollable” epilepsy called infantile spasms.

As his condition deteriorated, he was diagnosed with mitochondrial disease in February 2012. Jacob was taken into intensive care and the family’s specialist nurse referred them to Each.

Claire Wright, with husband Bob and their son Jacob
Claire Wright, with husband Bob and their son Jacob

“By that stage we knew we didn’t have long left and met the team at Milton,” said Claire, who has a four-year-old daughter, Charlotte.

“They were incredible and, from that moment on, all my fears about what a hospice was and meant went out the window. It was the most amazing place I’ve ever been in my life.

“Jacob died two weeks later. On the day he died, we’d been due to go in and spend the weekend together at Milton.

“His little body was taken straight from hospital to the hospice for a further 10 days and he went from there to his funeral.

“Jacob lived for 501 days but I always think of his life lasting 511 days, because of those precious 10 days. To me, they were just as important as the previous 500.”

Claire, 47, who now works as an operations manager for the Lily Foundation, a Warlingham-based charity dedicated to fighting mitochondrial disease, said of the Each staff: “They made the whole experience bearable, giving us time with our son – time we wouldn’t have had otherwise – and also giving other family members a chance to visit and say goodbye.

Claire Wright, with husband Bob and their daughter Charlotte
Claire Wright, with husband Bob and their daughter Charlotte

“My eight-year-old nephew visited twice and I read him stories, next to Jacob’s cot. After the second time I remember him saying ‘I think I’ve said goodbye now’.

“It gave him some kind of closure and he’d never have had that opportunity without Each.

“Goodness knows what effect that might have had on him in later life.”

Claire and Bob also received help in terms of planning Jacob’s funeral.

“Everyone at the hospice was phenomenal,” she added.

“Obviously they couldn’t make things better but they were there to help with things like the funeral, which lifted such a weight from our shoulders.

“We were dealing with things we never thought we’d have to contend with and yet here was a group of people ready to help and support us.

Jacob Wright, who died aged 16 months. Picture: Richard Marsham
Jacob Wright, who died aged 16 months. Picture: Richard Marsham

“Another memory that will always stay with me was waking up in the middle of the night and wanting to hold Jacob’s hand.

“When I went into his room, they were playing nursery rhymes as though he were still alive.

“To some people that might sound strange but to me it was just beautiful. He was still my little boy and the fact they cared so much meant the world.”

Claire continued having one-to-one counselling after the funeral, which “helped enormously”.

And she has thrown herself into fundraising, as well as raising awareness.

She has taken part in an Each Santa Run and, in April 2019, was the face of a hugely successful two-week campaign called ‘Dress Claire’ to help drive donations to Each’s shops, launched days after the seventh anniversary of Jacob’s death.

Life-sized cardboard cut-outs of Claire, partially hidden behind a board, greeted customers. Donations soared and £30,000 worth of items were handed over. Each received around 13,400 bags during the campaign, 30 per cent up on 2018.

“The Santa Dash was the first thing I did and it gave me a new sense of purpose,” she said.

Claire Wright, with husband Bob and their son Jacob
Claire Wright, with husband Bob and their son Jacob

“It was a catalyst for wanting to do more and from that point on I threw myself into doing whatever I could. It feels like by raising money I have a new way of being Jacob’s mum.

“If I give something back in any way, I always will. It’s my way of saying thank you for everything the charity has done, then and now.

“I remember the staff saying they’d always be there for me and they’ve been true to their word.

“Each is the most amazing charity and I honestly can’t imagine going through what we went through without it. It really is phenomenal.”

Claire will take on the walk alongside about 150 others, including friends Beccy Ogston and Lesley Owen.

Beccy was one of Jacob’s nurses at Milton. They lost touch, but have since become great friends and running bodies. Both live in Sutton and their children attend the same primary.

Claire said: “I’ve done the odd half-marathon and have a decent level of fitness, but the main thing is the mental side of taking on such a massive challenge.

“It’s about telling your legs and feet to keep moving when the rest of your body is willing you to stop.

Jacob Wright, who died at 16 months
Jacob Wright, who died at 16 months

“It’s such a long way but I know we can do it. We’ll get there and it’s nice doing something a bit less intense than running.

“We’ll be able to walk and talk along the way and the three of us will spur each other on. When one is struggling, the others will be able to lift them.

“I’m very proud to be taking part and when I tuck into my fish and chips at the end, I’ll be pleased to tick the challenge off my list and think ‘I did it’.”

There’s still time to sign up and join them. Walkers will receive a finishers’ medal and T-shirt.

There will be regular refuelling stops with snacks and drinks, a lunch break and hot food at the finish. The route is clearly marked and medical assistance will be available.

Tickets cost £30, or £40 with an optional coach transfer from the finish line at Yarmouth to the start line at Cromer. Walkers are asked to have a target sponsorship of £150.

To sponsor Claire, visit eastangliaschildrenshospices.enthuse.com/pf/claire-wright.

To sign up for the walk, visit each.org.uk/support-us/events/pier-to-pier-2022/.

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