Jake’s story

"Zest is an invaluable commodity.
Without its support many families, like ours, would lose a vital service that makes such a difference to our daily lives"


One young adult who regularly enjoys Zest’s care and opportunities is 21-year-old Jake Doyle from near Needham Market in Suffolk.

“Jake absolutely loves his regular short break visits to Zest. It means he is centre of attention, gets to do things he likes doing and has ‘Jake time’,” explained Jake’s mum Beckie Davy.

“Having a little independence from us is so important for him to grow. It also means as a family we can do activities with his siblings which are not suitable for Jake due to his disabilities. Also, I can have ‘mum time’ with my other boys, when sometimes it can be really difficult to give them my full attention when Jake’s needing me too.”

After many years of living with challenging, previously unknown conditions, Jake was diagnosed as having bilateral bands subcortical heterotopia, refractory epilepsy and esophageal dysmotility at Great Ormond Street Hospital in 2013.

“Up until this point Jake had been made to feel like a hospital number,” added Beckie.

“His diagnosis didn’t really change anything apart from having a label. It’s an incredibly rare condition, with only one other case in the world being diagnosed.

Jake Doyle Credit The Doyle Family 2

“As we were a long time in receiving any support, Jake didn’t have much time at EACH before a stress-free transition to Zest, which has made such a great difference to his quality of life.”

Due to his diagnosis, Jake’s condition can vary from hour to hour and his family always require a back-up plan to react to such events, which is why the support of St Elizabeth Hospice’s Zest programme is so important.

Beckie said: “Thanks to Zest, as a family we are able to make plans and go on short trips without having to worry about disabled facilities and what would happen if Jake was having very bad seizures.

“We face challenges as a family and support one another but to have Zest there to back us up is vital. Jake’s condition is life-limiting but the outlook is for Jake is to have normality, which is exactly what Zest and our family allow him to have.

“He is a naturally sunny young man who lives for the moment and loves nothing more than to be bossy! He doesn’t let his condition get him down and just gets on with things in his own jovial way.”

As well as Zest’s Short Breaks scheme, which allows young people to enjoy independence away from home, Jake and Beckie also attend Zest’s monthly X-Change groups, which enable young adults and their families to socialise with one another, often forming their own support groups.

“Zest is an invaluable commodity. Without its support many families, like ours, would lose a vital service that makes such a difference to our daily lives. This is why the profile of Zest needs to be raised further and more funds are needed, because so much more can be achieved with greater support,” added Beckie.

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