‘Surely it couldn’t happen again, life can’t be that cruel’

NIGHTMARE OF CHILDHOOD DEMENTIA A REALITY FOR DEVASTATED PARENTS

WATCHING a loved one fall victim to dementia can be heartbreaking. But what if that person was just four-years-old?

Childhood dementia is a cruel disease – and most diagnosed with the incurable condition won’t live beyond the age of 13.

For Lucy and Mike Carroll, from Poynton, that nightmare is reality.

The couple have two young children who suffer from Batten disease, a neurodegenerative disease of which dementia is a symptom.

It has left their son, Ollie, seven, in a wheelchair, unable to speak, and unable to see.

His younger sister Amelia, four, was diagnosed with the disease a month after Ollie.

However, for now, her symptoms have been halted – after Lucy, 33, and Mike, 34, fought for two years to get their children on to a clinical trial at Great Ormond Street Hospital.

Lucy, a full-time carer for Ollie and Amelia, who have two older brothers, Danny, 11, and Micky, nine, has opened up about the family’s heartbreaking battle with the disease in the hope of raising awareness, and to get message out that ‘dementia strikes children too.’

“Ollie was born completely healthy,” Lucy said. “He was hitting all of his milestones, he was potty-trained.

“When he was around twoand-a-half we started to notice a speech delay. He was always falling over and bumping into things as well, but he was a little boy and the health visitor said it was normal.

“There was no indication that anything was wrong, and we can see why and how it was overlooked.”

Lucy explained that it was around a year later that Ollie suffered his first seizure.

“He was in the bath at the time. He stopped breathing, it was terrifying. Mike gave him CPR and brought him back, it was horrendous,” she said.

“We rushed him to hospital and doctors said he had a high temperature from a urine infection and that lots of children have convulsions brought on by a high temperature.

“They said it probably wouldn’t happen again, but within two hours of getting home he had another one.”

Over the next few weeks, Ollie began to have seizures every other day and his parents decided to take him to the Royal Manchester Children’s Hospital.

He was diagnosed with generalised epilepsy and referred to a neurologist for further tests.

“At this point, as parents, we felt like doctors knew something but weren’t telling us,” Lucy added.

“They were asking detailed questions about his speech and mobility, and they wanted him to walk so they could watch him.

“We went to Ollie’s GP and requested his medical records and looked at all the tests he was having. We did some research and came up with a list of five things they were testing for and searched each one online.

“Batten Disease was on the list, but we never thought for one second it would be that.

“Reading the symptoms, they were horrific – kids that had lost their speech, mobility, sight, ability to swallow – and Ollie was still running around playing and talking. “In our minds there was no way he could have something so cruel.” Lucy recalls the moment they were dealt the devastating news. “Ollie was sitting on my knee. Me and Mike both broke down in tears and I’ll always remember Ollie looking at his dad and gently wiping his tears away. Lucy Carroll He had no idea what they were telling us, he just sat there smiling.

“We were devastated, our family came round and tried to help out as much as we could, and we decided that we needed to get away, just us.

“We took Ollie to Peppa Pig World – and he had 14 seizures in the space of three hours.

“We made the decision right there that we weren’t going to let this disease take over our child, we were going to fight and when we came home we discovered a doctor in London who specialised in the condition.

“At that appointment we also found out the disease was genetic.

“It hit us like a tonne of bricks, but again in our head we thought, ‘we’ve got one terminally ill child, surely it can’t happen again, life can’t be that cruel.’

“We had our older sons Danny, 11, and Micky, nine, tested. They