HOSPICES aren’t about dying...they’re all about life. That’s the powerful message from the mum of a little girl who relies on hospice care for her survival.

Seven-year-old Ava Chaplin has hydrocephalus, a dangerous build-up of fluid on the brain which has left her with significant brain damage.

Ava requires 24-hour care, is completely blind and cannot sit or stand unaided.

Life has been hard for Ava and her family, but they say the support given them by Little Havens Children’s Hospice has made a huge difference.

Ava’s mum, Liz, 38, says: “I can still remember everything about the moment they told me about her diagnosis...the look on the face of the consultant when he came in, the nurse’s face, the cracks on the wall, everything.

It’s in my brain like a tattoo.

“Those early days were just a blur, a horrendous nightmare you don’t wake up from. When you have a child, that precious bond is immediate – and then somebody comes and tells you that they’re not the perfect child you thought they were.

“But the more they tell you, the stronger that bond becomes and the more you love them.”

Liz, husband Danny, son George and Ava all now spend time all through the year at the Thundersley children’s hospice for respite breaks.

Liz said: “It’s incredibly difficult and a constant juggling act.

“You feel constantly guilty as a mother for not being there for her.

“Ava has to be my priority all the time, because her medical needs demand that. George grew up overnight, because he had to.

“He had just turned three when we had Ava and I’d say I look back of photos of him now at that age and the photos within that first year and I don’t remember them being taken. I don’t remember him at all in that first year. He was lost.”

The family was referred to Little Havens by a consultant who recognised they would benefit from some respite.

Liz said: “All my fears about the kind of place it would be were eradicated within minutes.

“I expected it to be a sad place, with lots of really sick, poorly children, with parents crying, but we came in and heard laughter.

“That’s generally what we hear every time we’re here. It’s amazing. It’s not about dying.

“What we’ve come to see is Little Havens is for us – it’s about living. It gives Ava a life.

“The stuff they’ve got here is like Disneyland for Ava – the music therapy, the sensory room, the swimming, all the things she loves to do are here at her fingertips.

“The other side is that we all come. It’s a holiday for George.

We come and we stay as a family.

We laugh and we play and we go swimming.

“George goes on the trampoline and in the ball pool and that’s how he sees it.

“Yes, he sees the realities of life – and death – here but actually, I think in a way, it’s helped him come to terms with things with Ava.

“He’s very aware of what her needs are, what the prognosis is, but the comforting thing for us, since we’ve come here, is being able to see that actually, life does go on.

“The people here are like a comfort blanket that drags you through those unimaginable days. We’ve seen it working and we’ve seen families stay together and have the strength to do that because the team here supports them through it.”

For more information on Little Havens, go to havens hospices.org.uk/littlehavens