Battens Disease: Parents heartbreak as four-year-old girl from Cleveleys is diagnosed with severely life limiting illness which causes childhood dementia

Last week, Cheryl Parry, and her fiancée Chris Gregson received the devastating news that their little girl, Mabel, has Batten Disease – an incurable illness which affects the nervous system.

Cheryl, a marketing and communications officer, told the Gazette: “We are completely terrified of watching her go downhill. Life expectancy is between five and ten years, perhaps a little bit longer.”

A device will be fitted to Mabel’s brain

The disease is extremely rare, with an estimated 25 – 40 children living with the condition in England. Mabel starts her treatment at St Mary’s Hospital in Manchester on Friday 23 June – which is expected to slow down the degeneration process, but is not a cure.

She will have a device fitted into her brain so she can receive enzyme infusions every 2 weeks.

Mabel, who used to enjoy swimming and ‘lives for the outdoors’, is already losing the ability to walk and struggling with her speech.

Childhood dementia

It will lead to fine and gross motor skills that result in the loss of mobility. Battens also causes the child to develop dementia.

Cheryl added: “Thankfully she should keep her long term memory, so she will know who we are but will lose her short term memory and won’t be able to learn new skills.”

‘Every day we think are we going to get the phone call to say it’s all a bad dream, but we know it’s not’

Mabel had been relatively healthy until she started getting seizures in January 2023.

She was prescribed medication, and was went for tests and scans to get to the bottom of what was causing her seizures.

She’d had some language delays that the parents thought might be autism, but they had never suspected anything was seriously wrong.

“Every day we think are we going to get the phone call to say it’s all a bad dream, but we know it’s not. We just have to dig very deep.”

£10,000 raised for Mabel

Following the diagnosis, Paul Latham, a close friend, set up a GoFundMe page to help her family make some special memories.

It has already reached £10,000.

Cheryl and Chris said they were ‘overwhelmed’ by the generosity.

“We don’t want any grand holidays to Disneyland, we just want to create good memories while we can and go on normal family days out to the tower, and the Sea Life Centre.”

‘She’s helping to find a cure, so no family has to go through this nightmare’

Mabel will start a breakthrough enzyme treatment which will hopefully slow down the regression, but it will take 9-12 months to take effect.There is also a chance that she could be considered for an eyesight trial at Great Ormond Street Hospital.

Cheryl said they are ‘clinging on to’ the comfort that Mabel will help find a cure for Battens.

“Mabel will be our legacy. She’s helping to find a cure, so no family has to go through this nightmare.”

Can you help create memories for little Mabel?

If you can help Mabel and her family to create lasting memories, please contact our Community Reporter for Thornton Cleveleys on [email protected]