Battens Disease: Parents heartbreak as four-year-old girl from Cleveleys is diagnosed with severely life limiting illness which causes childhood dementia
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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.”
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Hide AdA 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.
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Hide AdCheryl 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.
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Hide Ad“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.”