Dylan’s story

Mum Clare Brook says she enjoys speaking to other parents at family days organised by East Anglia’s Children’s Hospices (EACH).

Nine-year-old son Dylan has Mucopolysaccaridosis type III – a rare genetic condition that causes fatal brain damage. He was diagnosed when he was two.

Clare is married to Darryl and has two other sons – Callum, 14, and Elliot, six. The Brooks recently attended EACH’s family beach day at Felixstowe.

“We started going to family events like that as soon as we possibly could and always find them useful and enjoyable,” said Clare, who lives in Ipswich. Something like the beach hut day is absolutely great.

“It’s helpful talking to other parents in the same boat and hearing about their experiences.

“We help and support each other, as well as asking and answering each other’s questions. I always learn a lot on days like this.

“It’s also great for the kids and siblings. They forge friendships and enjoy spending time together. It gives them a sense of freedom.”

EACH hosts the beach day every summer and hires The Hut, which has its own kitchen, toilet and facilities and is especially for charity and community groups.

Staff brought a hoist and hired a beach wheelchair, so children receiving care were able to dip their feet in the water and feel the sand between their toes.

Published in September 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). 

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

It’s helpful talking to other parents in the same boat and hearing about their experiences.

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