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Elisa’s story: “Sometimes it feels like you have to prove your child’s worth because they’re disabled.”

Elisa’s story, told by her dad Dan…

“Elisa was born with Cerebral Palsy. She also had epilepsy, dysphagia, was registered blind and deaf and had both central and obstructive sleep apnoea.” Elisa had no control over her body and required 24/7 care.

Elisa is one of four daughters and loved slapstick comedy and Futurama. “Despite everything, she loved to laugh.”

As Elisa grew, her care needs grew with her. Dan gave up work when Elisa was three so that he could manage her care. “It became like a small business, where I was a PA to Elisa and I was managing her day-to-day life and all her medicines, her schedule of appointments and who was caring.”

The family lived in Bournemouth and received a continuing health package, which entitled them to a carer most nights. But this was only as long as the family were able to find a carer for the shift. They were also supported by the paediatric team at their local hospital, two children’s hospices, the community nursing team, a social worker, consultants and staff at Elisa’s school.

“We were lucky that our local hospital was quite small. We knew everybody and they had a good understanding of her needs. But whenever a new doctor was introduced, who hadn’t met her, I’d have to tell her life story.

Explaining that she's disabled, not stupid, sometimes comes into the equation as well. Sometimes it feels like you have to prove your child's worth because they're disabled.

Elisa died in January 2023.

Most of the support Dan and his partner received came from other parents. But nobody was there to prepare the family for the practical side.

“DLA associated benefits were stopped five days after Elisa died. We hadn’t even planned a funeral yet, and we were getting letters to say our subsidised council tax was being stopped. I had to go to a job centre to explain why I hadn’t worked for eight years. There’s no awareness of what we’ve been through as a family and what we might be trying to cope with. It’s all automatic and very impersonal.

“Not having Elisa around now is challenging. For the entirety of her life, I was always in panic mode. And I don’t think it ever goes away. I have moments of profound guilt where I think ‘could I have done things differently?’ How do we exist as individuals when we’ve given so much of our life to something that’s no longer there?”

Right now the support that children like Elisa and their families are offered depends on where they live. This is unacceptable and the dad of another child Jaxson, Jim, is writing to Rishi Sunak to tell him that – if you’d like to show your support for children like Elisa across the UK please add your name to Jim’s letter today.

Family stories