Heartbreak at 'family-destroying' disease of girl, 11

The parent of a terminally sick 11-year-old has spoken of her heartbreak astatine knowing her girl whitethorn not unrecorded past her teens.

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

The unwellness is simply a fatal neurological upset that usually begins successful childhood.

The strain Anna has affects conscionable 2 radical successful Wales and 39 successful the UK, according to the Batten Disease Family Association.

With a cardinal grounds being puerility dementia Anna's beingness expectancy is expected to beryllium constricted to her precocious teens oregon aboriginal twenties.

Anna's mum, Laura Ann Roberts, said: "Nobody understands however hard it is - it's specified a cruel information and we cognize the worst is inactive to come."

The illness, Laura said, "kills a kid and destroys a family".

Anna was calved steadfast successful January 2014. There was thing to suggest thing was incorrect until Covid struck successful 2020.

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

In 2022 tests astatine Liverpool's Alder Hey Hospital revealed what was wrong.

Laura said: "I had travel crossed Batten Disease connected the net but didn't truly deliberation that Anna had specified a unspeakable condition."

As the unwellness progresses patients endure intelligence impairment, worsening seizures and nonaccomplishment of sight, code and centrifugal skills.

Laura said: "It's a precise cruel disease. Seeing things alteration and knowing that things are getting worse.

"It's present rather hard knowing what she says. She has much occupation walking and her feet crook inwards."

"We're conscionable waiting for the adjacent happening to happen. She's connected a batch of medicine for the epilepsy, she's been having atrocious hallucinations.

"She has besides go rather depressed. She gets treated for that and has besides medicine to assistance her sleep. She doesn't slumber much."

Leaving the location was difficult, Laura said, arsenic Anna has "bad meltdowns and falls often".

Because of her sound sensitivity she nary longer goes to school.

That means her 3 sisters person to assistance look aft her.

"I look astatine my different 3 daughters and wonderment if Anna volition scope their age," Laura said.

"But she won't beryllium capable to bash thing they've done, spell to assemblage oregon larn to drive."

Coping with her daughter's information was lonely, Laura said.

"I person no-one adjacent I tin speech to and recognize what we're going through," she said.

"Other parents unrecorded acold distant and I occasionally interaction immoderate mums connected societal media."

Batten Disease Family Association main executive, Liz Brownnutt, said the organisation supported 117 children and young adults with Batten illness successful the UK, 4 successful Wales.

Laura was grateful for her family's assistance and the community's support.

But it was, she said, "so upsetting".