Evie’s story

11-year-old Evie has CDKL5, a rare genetic condition, along with her family Evie has been coming to Little Havens for respite breaks since 2016. Evie and her little brother Max both enjoy visiting Little Havens and playing in the gardens together.

Sarah, Evie’s Mum, said “When Covid-19 hit we were stripped of our support network overnight. It was a shock and with the added worry of Evie catching Covid-19 it made it a very hard time for the whole family. Throughout lockdown, Little Havens provided Zoom sessions, like virtual music therapy, which massively helped as it gave Evie some interaction and stimulation, which she needed.”

As lockdown restrictions eased in April 2021, Evie along with her little brother Max and mum Sarah were able to come and use the facilities at Little Havens like the accessible garden equipment and the multi-sensory room.

Sarah continues, “When restrictions eased, and Little Havens were able to open their gardens for families to visit, it was a sigh of relief. Because the hospice is somewhere we can go and feel safe, just be ourselves and not have to worry. Everything Evie needs is at Little Havens, plus the team there are wonderful, they can’t do enough for you.

“Both children loved coming back to the hospice, and for me to see them happy in a normal environment after shielding was a massive moment. We were out as a family making memories again.

“Evie loves being outside at Little Havens because there are things there she can actually use and enjoy like the roundabout and swings – she doesn’t miss out on anything at Little Havens. Both Evie and Max love being outside in the fresh air, and the hospice is one of the only places they can enjoy this together. Without the wheelchair-accessible facilities, this wouldn’t be possible, it would just be Evie watching Max have fun. We don’t have any play equipment like this in our local parks, so seeing Evie being able to enjoy these activities with Max at the hospice means everything to us.

“Inside at Little Havens, there is so much for Evie to enjoy too. She loves the multi-sensory room, the lights really stimulate her, and there is music on in the background, it’s a place where she can relax and enjoy.

“For us to visit Little Havens again and have some kind of normality back was a massive step. Being locked away at home for 14 months has really knocked my confidence and I am frightened of getting back out and doing normal things because Evie is vulnerable. But to have Little Havens there by our side to help and ease us back into normality by letting us visit the gardens is amazing. We can’t wait to be making more magical memories as a family at the hospice.”

“Coming to Little Havens is like having a comfort blanket. We feel safe, we can be ourselves and you don’t have to worry. Everything we could possibly need is here, plus that added touch of magic which makes Little Havens what it is.”

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Published in 2021

Coming to Little Havens is like having a comfort blanket. We feel safe, we can be ourselves and you don’t have to worry.

Sarah, Evie's Mum