Ava and Evie enjoying music therapy at the hospice with family

Evie’s Story

12-year-old Evie has CDKL5, an extremely rare genetic condition, which means life can be quite challenging for the family. CDKL5 affects the child’s neurological development, and for Evie, this means she can’t walk, talk or feed herself, so she relies on mum, Sarah, for everything.  

In 2016 the family were referred to Essex’s only children’s hospice – Little Havens.  

“When I got the phone call to say we were accepted for care at Little Havens, I sobbed. I was so happy to know that we had somewhere to go; that was a safe haven for us. I think reality hits home when you have to ask for help. 

“To have Little Havens, a place I can leave Evie where I know she will be safe, is a massive thing. Evie loves being at Little Havens; she has a smile on her face when we talk about it. She enjoys everything from the garden to the sensory room and the Care Team at the hospice.” 

“The support from the hospice makes it a little bit easier for the family to carry on.  

“I’ve made some amazing friendships at the hospice, incredible people who are friends for life. Without these friends and the Care Team, I’d be lost.” 

“Life without Little Havens would be hard; I’d be broken without that support. We need it, the children need it for us to be able to carry on. I don’t think anyone can quite understand how much it means to families like us.” 

The care from Little Havens has adapted over the years to suit the family, like when Max was born in 2017. Sarah recalls happy memories from being at the hospice and feeling Max kick in her tummy while Evie was being cared for, giving the family had time to relax.  

“The support when I first had Max was a massive help as we adjusted to family life as a four. The respite stays gave Evie a break and allowed me to spend time with Max while he was a newborn.” 

“The hospice has always been there, even during the pandemic. They’ve been at the end of the phone or a Zoom session, someone has always checked in on us.” 

To find out more about how you or someone you know would benefit from the care at Little Havens, click here.

If you would like to donate to Little Havens please click here.

Published in 2022

Life without Little Havens would be hard; I’d be broken without that support.

Sarah, Evie's Mum