'You're living with this grief of watching your child regress'

A mother whose daughter was diagnosed with a rare degenerative condition has opened up about the grief of watching her little girl regress in front of her eyes.

Mabel, now aged seven, was diagnosed three years ago with Batten disease - an incurable illness which affects the nervous system, causing seizures, visual impairment, mobility loss and early death.

"It's like having a baby, but you're going backwards, so you're not watching them grow up, you're watching them regress," said her mother Cheryl, who wants to raise awareness about the condition.

Mabel, from Thornton in Lancashire, was born in May 2019 but it was only when she was about 18 months old that concerns began to be raised.

"We started to realise that possibly she may be autistic or she might be a slower learner," said Cheryl, 42.

"She'd gone to nursery and they'd noticed that she was walking on her tiptoes and apparently that's a sign of autism."

In January 2023, Mabel suffered her first seizure.

Cheryl said it "snowballed from there" with Mabel having seizure episodes before having "drop attacks" where she would just suddenly drop to the floor.

"It was just hell trying to find out what was the matter with her," she said.

"We were back and forth at hospital."

In June 2023, Mabel was diagnosed with Batten disease - a condition completely unknown to her parents Cheryl and Chris at that point.

"I went into the waiting room at the children's ward and I was thinking every single possibility, every single outcome, and that was just one thing that never, ever crossed my mind," she explained.

"When they said to us 'she's got Batten's disease - it's life limiting, the life expectancy is between five and 10 years old, they basically lose everything, they lose every skill.' - that was obviously the hardest day of our lives ever.

"It's quite slow, the progression of the disease, you're kind of living with this grief of watching your child basically regress in front of you."

According to the NHS, there are about 25 to 40 children living with the condition in England.

"It's a super-rare genetic disease that comes from a faulty gene from the parents," said Cheryl.

"So me and my husband have both got this faulty gene that we had not a clue about.

"Then it's one-in-a-million chance of you finding someone, having a baby, and then it's a 25% chance of you passing it on to the child."

Now the family is raising money to buy a wheelchair-accessible van and to make as many memories as they can with Mabel and her big sister Maisie.

Cheryl, along with six of her closest friends, who she described as her "absolute rocks", will later take on the Tough Mudder Manchester assault course in Knutsford, Cheshire, to raise funds and awareness.

"To watch Mabel even be able to take one step now would be a miracle," she said.

"So I can at the age of 42, with a healthy body, do Tough Mudder.

"I think that's what's going to get us through, just thinking about what's happened with Mabel and just kind of getting through it."

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