A COUPLE who spent years helping young people are praying for a miracle after learning their own daughter has only a few years left to live.

Four-year-old Addy Clarke is one of just 100 children in the world to be diagnosed with a regressive brain disease called Batten’s Disease.

Her skills will slowly diminish until she loses her sight, voice, control of her limbs and, finally, her life in as little as two years.

Regular enzyme injection treatments at Great Ormond Street Hospital could slow this progression and extend her life expectancy to four or six years, but even the best case scenario will see her heartbroken parents Hayley and Dave say goodbye by the time she turns 10.

They noticed the first signs of something wrong when she could only say one or two words together by the time she turned three. Then in May she started suffering seizures.

The first was a near-death experience that knocked her unconscious and stopped her breathing. The second led to a diagnosis of epilepsy. The third prompted medics to conduct more thorough tests of her genes and blood.

The results came in last Wednesday sending the Stratton couple reeling.

Dave said: “We knew something was wrong when they called us in to say they were extremely sorry. It was the words that every parent never wants to hear – life expectancy massively reduced. It was crushing and the fear is crippling, we’re devastated. No parent should have to bury their own child.

“The regression starts at three and is like dementia. But it doesn’t show outwardly until the seizures begin. At one point, she had 17 in a day.

“She’s the most beautiful, affectionate young girl you could ever meet, and she’s blissfully unaware of what’s happening to her.

“She will hug and kiss you when she meets you. She loves to run around but her mobility is unstable now, she has a new limp and a constant tremor.

“She has the mind of a 21-month-old now, she does not understand much, but she has a very innocent joy. She’s like no other.”

During lockdown, the couple have continued working with charity Swindon Youth For Jesus and looking after Addy’s seven-year-old brother Sam, who is aware his sister is ill but not the severity of her condition.

Dave added: “As Christians, we are praying for a miracle because there are only two outcomes – either that happens or she passes away.

“Ever since I was 18, I have worked with that charity, spreading the good news of hope.

I have spoken to families with children who are suicidal or in extreme pain or have limited lifespans. It’s almost ironic that I’m now in their position and that I’ve helped thousands of children over the last 17 years but can’t help my own.”

The costs of paying for the life-extending therapy, the regular trips to London and the conversions to the bungalow they will move into are far more than the family can afford.

But in just a few days of setting up a fundraising page with a £98,000 target, more than £35,000 in donations has poured in from well-wishers and former clients.

Dave said: “It’s been incredible to see how many of the young people and parents we’ve helped are now helping us in our time of need, like their way of saying thank-you.

“This is a monumental task for us, so we’re calling on anybody to help with finances or to adapt our new home. We are a family who believes passionately in helping others but now we are in incredible need.

“We want to move to a bungalow so it’s easier for Addy to get around and familiarise herself with the layout before she goes blind.

“The response we’ve had is encouraging, it does take the pressure off, but we would trade all the money and more to have more time with her.We’ve known about this disease for less than a week but we will spend our lives to help find a cure for it so that other families don’t have to go through this.”

The chance of a child having Batten’s disease is one in millions and occurs after a combination of two very specific gene mutations. Nine other families in the UK are having the same treatment that Addy will have.

Visit uk.gofundme.com/f/support-for-addy-and-her-family