When Dale Beverton isn’t on the beat as a police officer, almost every waking hour is spent fundraising for his four-year-old daughter Grace.

Grace has a genetic disorder so rare scientists don’t even have a name for it.

It is believed she is one of around 80 people in the world who have what is referred to by scientists as RHOBTB2, which caused her life-threatening seizures when she was only five-months-old.

Grace is unable to walk or talk but she has taken her parents on what Mr Beverton describes as an adventure as he and his wife tailor every aspect of their lives to looking after her.

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They have managed to accumulate £45,630 via their Hope for Grace fundraiser, which is part of the larger umbrella charity called Tree of Hope.

But they are still looking for help as they seek to nurture their severely disabled daughter as safely as they can.

It’s now over two years since Grace was hospitalised for a seizure, but she still suffers from excruciating full-body cramps.

As she gets older, the provisions for her safety become ever more expensive.

Mr Beverton said he and his wife even had to move house to make sure Grace could be well cared for and have just bought a special bath which will allow her to wash independently as she gets older.

He said: “We’ve just purchased a second-hand bath and it cost us £2,500. It would have cost us £10,000 had we bought it brand new.”

Grace is to undergo a special procedure early into next year which will break her legs in order to reset her femur bone.

“Her skeletal structure has the femur going diagonally into the hip but her femurs are angled differently,” Mr Beverton said.

Countless hospital appointments, eye-watering costs for specialist disability equipment and spending every waking hour fundraising does not sound an easy task, but Mr Beverton says he would not have it any other way.

“It’s an adventure we are on and we’ve met some amazing people on that adventure,” he said.

“We try and share her story as much as we can – we want people to see how she progresses because there are families around the world who have children with this, and they are so grateful we’re sharing this story.

Mr Beverton has connected with parents in Israel, France, Spain and America who have children with the same genetic mutation.

“In a way, people look at us and think “poor them,” but I think Grace has taken us down so many roads.

“I’ve started a self-help group for dads who have children with disabilities – I never would have started that had it not been for her.”

Donations towards the Hope for Grace fundraiser can be made via www.treeofhope.org.uk/grace-beverton.