Mum's 32-mile charity walk for hospice that cared for baby son

Claire Wright’s son Jacob had mitochondrial disease and there was no treatment or cure for it.

He died in April 2012 at just 16 months old at Addenbrooke’s Hospital in Cambridge.

After the “incredible” support Claire, her husband Bob and their four-year-old daughter Charlotte received from East Anglia’s Children’s Hospices (EACH) in Milton, Claire has decided to take part in its Pier to Pier event on June 25.

“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,” said Claire.

“It’s all for a charity that’s close to my heart though.”

Claire with her husband Bob and son Jacob. Jacob died at just 16 months old and was cared for at EACH's Milton hospice. (Image: Credit: EACH)

Alongside friends Beccy Ogston and Lesley Owen, the trio and about 150 others will trek 32-miles from Cromer to Great Yarmouth, a gruelling walk along the beautiful Norfolk coastal path.

If Claire needs any inspiration along the way, she can turn and face Beccy – one of Jacob’s nurses at Milton who also lives in Sutton and who Claire is now great friends with.

Claire said: “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 other will be able to lift them."

Jacob was born in December 2010 and had health complications from the outset, including a cataract in one eye and mild hearing problems.

Jacob (pictured) died in April 2012 at just 16 months old from mitochondrial disease. (Image: Credit: EACH)

Those issues intensified and he had a form of “uncontrollable” epilepsy called infantile spasms.

Sadly, Jacob’s condition deteriorated and he was diagnosed with mitochondrial disease in February 2012.

He ended up in intensive care and it was at that point the family’s specialist nurse referred them to EACH.

“By that stage we knew we didn't have long left but the team at Milton were incredible and, from that moment on, all my fears about what a hospice was and meant went out the window,” said Claire.

"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 ten days and he went from there to his funeral.”

Claire and Bob with their daughter Charlotte. (Image: Credit: EACH)

Jacob lived for 501 days, but Claire says she always thinks of his life lasting 511 days because of the precious ten days he spent at EACH’s Milton hospice.

“To me, they were just as important as the previous 500,” she said.

“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.”

She added: “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.”

Since Jacob’s death, Claire has found a renewed purpose by throwing herself into fundraising, as well as raising awareness.

She has previously taken part in an EACH Santa run and, in April 2019, was the face of a hugely successful campaign to help drive donations to EACH shops.

“The Santa run was a catalyst for wanting to do more and from that point on I threw myself into doing whatever I could,” said Claire.

“It feels like by raising money I have a new way of being Jacob's mum.

“It’s my way of saying thank you for everything the charity has done, then and now.”

Claire with her husband Bob and son Jacob. Jacob died at just 16 months old and was cared for at EACH's Milton hospice. (Image: Credit: EACH)

Claire says that she remembers the staff at EACH saying that they would always be there for her and she can now say that they really have 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,” she said.

“Jacob was still my little boy and the fact they cared so much meant the world.

“It really is phenomenal.”

To sponsor Claire for her 32-mile charity challenge, you can donate via her fundraising page on EACH’s website.

"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’," she said.