Gwynedd: Mum’s heartbreak over daughter’s ‘family-destroying’ disease

The mother of a terminally ill 11-year-old has spoken of her heartbreak at knowing her daughter may not live past her teens.

Anna Lowri Roberts, from Sarn Mellteyrn, in Gwynedd, was diagnosed with CLN3 Batten Disease in May 2022.

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

The strain Anna has affects just two people in Wales and 39 in the UK, according to the Batten Disease Family Association.

With a key symptom being childhood dementia Anna’s life expectancy is expected to be limited to her late teens or early twenties.

Anna’s mum, Laura Ann Roberts, said: “Nobody understands how difficult it is – it’s such a cruel condition and we know the worst is still to come.”

The illness, Laura said, “kills a child and destroys a family”.

Anna was born healthy in January 2014. There was nothing to suggest anything was wrong until Covid struck in 2020.

Her eyesight worsened and she began having seizures. Coping with schoolwork became difficult.

In 2022 tests at Liverpool’s Alder Hey Hospital revealed what was wrong.

Laura said: “I had come across Batten Disease on the internet but didn’t really think that Anna had such a terrible condition.”

As the illness progresses patients suffer mental impairment, worsening seizures and loss of sight, speech and motor skills.

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

“It’s now quite difficult understanding what she says. She has more trouble walking and her feet turn inwards.”

“We’re just waiting for the next thing to happen. She’s on a lot of medication for the epilepsy, she’s been having bad hallucinations.

“She has also become quite depressed. She gets treated for that and has also medication to help her sleep. She doesn’t sleep much.”

Leaving the house was difficult, Laura said, as Anna has “bad meltdowns and falls often”.

Because of her noise sensitivity she no longer goes to school.

That means her three sisters have to help look after her.

“I look at my other three daughters and wonder if Anna will reach their age,” Laura said.

“But she won’t be able to do anything they’ve done, go to university or learn to drive.”

Coping with her daughter’s condition was lonely, Laura said.

“I have no-one close I can talk to and understand what we’re going through,” she said.

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

Batten Disease Family Association chief executive, Liz Brownnutt, said the organisation supported 117 children and young adults with Batten disease in the UK, four in Wales.

Laura was grateful for her family’s help and the community’s support.

But it was, she said, “so upsetting”.