THE family of a three-year-old girl with a rare brain condition is to hold two events in Rhyl to help the hospice which has provided much-needed support to her.

Evie Withington, from Great Sankey, Warrington, has been diagnosed with AARS1, which mum Claire said prevents her from sitting up, talking or walking properly.

So rare is her condition, in fact, that Claire said she is one of “only four people” to suffer from it.

Her family own a caravan at Terfyn Pella Caravan Park in Rhyl, where they will be aiming to raise thousands for Zoe’s Place Baby Hospice through two events held during the last weekends in June and August.

Rhyl Journal: Evie Withington with her mum and dadEvie Withington with her mum and dad (Image: Claire Withington)


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Evie regularly receives care at its hospice in West Derby, Liverpool, as well as at Alder Hey Children's Hospital.

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Claire said: “There’s quite a lot planned for the events. Evie’s got a remote-controlled car that we operate for he, so she’ll be doing laps around the park in that, which she’ll be sponsored for.

“There’ll also be a raffle, tombola, assault course, ‘guess the name of the teddy’, and cake stalls, while we’ve also had a massive banner donated to try and raise awareness and funds for Zoe’s Place, too.

“It’s a very rare brain disorder which affects her in so many ways - she needs everything doing for her.

Rhyl Journal: Evie WithingtonEvie Withington (Image: Claire Withington)

“She receives care at Zoe’s Place four times a month, which she loves and which gives us some time off. She’s been going there for about a year now.

“Zoe’s is moving to West Derby Bowling Club, so we just felt we had to do something to help. We’re hoping to raise about £4-5,000.”

Zoe’s Place Baby Hospice provides respite, palliative, and end-of-life care to babies and children aged between zero and five, with life-limiting and life-threatening conditions.

The hospice works to ensure that children who are unwell can enjoy the best possible quality of life possible, while also supporting their families along the way.