Mum’s heartbreak over daughter’s ‘family-destroying’ disease | Global News Avenue

The mother of a terminally ill 11-year-old has told of her heartbreak when she learned her daughter might not live past her teenage years.

Anna Lowri Roberts, from Sarnmeltain, Gwynedd, was diagnosed with CLN3 Batten disease May 2022.

The disease is a fatal neurological disorder that usually begins in childhood.

According to the Barton Disease Families Association, the strain of the virus that Anna is infected affects just two people in Wales and 39 people in the UK.

Anna’s main symptom is childhood dementia and her life expectancy is expected to be limited to her late teens or early twenties.

Anna’s mum Laura Ann Roberts said: “No one understands how difficult this is – it’s a cruel situation and we know the worst is yet to come.”

Laura said the disease “killed a child and destroyed a family”.

Anna was born healthy in January 2014. Before COVID-19 hit in 2020, there was no sign of anything going wrong.

Her vision worsened and she began having seizures. Coping with schoolwork becomes difficult.

In 2022, tests at Alder Hey Hospital in Liverpool revealed the problem.

Laura said: “I read about Batten disease online but I didn’t expect Anna’s condition to be so severe.”

As the disease progresses, patients develop mental disorders, worsening seizures, and loss of vision, speech, and motor skills.

Laura said: “It’s a very cruel disease. Seeing things change and knowing they are getting worse.

“It’s hard to understand what she’s saying now. She has more difficulty walking and her feet turn inward.”

“We were just waiting for the next thing to happen. She was on a lot of medication for epilepsy and she had been having severe hallucinations.

“She also became very depressed. She was treated for that and was given medication to help her sleep. She wasn’t sleeping much.”

Laura said leaving home was difficult because Anna had “emotional breakdowns and kept falling”.

She no longer goes to school because of her sensitivity to noise.

This meant her three sisters had to help take care of her.

“I looked at my other three daughters and wondered if Anna would ever reach their age,” Laura said.

“But she won’t be able to do any of the things they do, go to college or learn to drive.”

Laura said dealing with her daughter’s condition was lonely.

“I didn’t have anyone around me to talk to and understand what we were going through,” she said.

“Other parents live far away and I occasionally contact some mums through social media.”

Liz Brownnutt, chief executive of Batten’s Families Association, said the organization supported 117 children and young people with Batten’s disease in the UK, four of whom were in Wales.

Laura thanks her family for their help and the community for their support.

But she said it was “so disturbing.”