Claire’s story

Claire Wright will forever be grateful to East Anglia’s Children’s Hospices (EACH) because it gave her “priceless” time with her baby son.

The charity is close to her heart following the death of little Jacob, in April 2012. He was just 16 months old and had mitochondrial disease. There was no treatment or cure and he died at Addenbrooke’s Hospital, in Cambridge. Claire and husband Bob, who live in Sutton, near Ely, received support at the EACH hospice in Milton.

Jacob was born in December 2010. He had health complications from the outset, including a cataract in one eye and mild hearing problems, but those issues intensified and he had a form of “uncontrollable” epilepsy called infantile spasms. Sadly, his 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 and met the team at Milton,” said Claire. “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 ten 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 ten days. To me, they were just as important as the previous 500.

“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. 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. 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 received help in terms of planning Jacob’s funeral. “Everyone at the hospice was phenomenal,” she said. “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.

“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 she felt “helped enormously”. She also 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 bold and hugely successful campaign to help drive donations to EACH shops. It was launched just days after the seventh anniversary of Jacob’s death.

Life-sized cardboard cut-outs of Claire, partially hidden behind a board, greeted customers and the initiative was called Dress Claire. Donations soared and £30,000-worth of items were handed over compared to the same period the previous year. In total, across the two-week campaign, EACH received around 13,400 bags, representing a 30% spike from 2018.

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

Published in May 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

Related Stories

Penny and Andrew’s story

Samuel Revitt, or Sam, was a young boy who received care at The Treehouse. He loved being with people, enjoyed school, being…

Read story

Shanice’s story

Serial fundraiser Shanice Green says the East Anglia’s Children’s Hospices (EACH) nurses and care staff are “angels sent from above”. EACH is…

Read story

Lesley’s story

Bereaved mum Lesley Smith says volunteering for the charity that supported her family is a chance to “give something back” – and…

Read story
Shopping Cart
Scroll to Top