A girl, 4, has been diagnosed with a disease likened to childhood dementia after her parents noticed she was regularly daydreaming.
The family of Adelei Clarke were told last week that she has contracted Batten disease and may die before her 10th birthday.
David, 35, and Hayley, 36, had noticed Adelei, from Swindon, was a little clumsier than usual and she seemed like ‘the lights were on but nobody’s home.’
She then had a seizure in May and her worried parents took her to doctors who diagnosed the rare illness.
Batten Disease affects a child’s central nervous system and doctors say it could cause Adelei to lose her sight and forget who her parents are by the end of the year. She’s likely to be in a vegetative state by the age of seven.
David, a youth worker, told Mail Online: ‘When Addy’s symptoms first started, we just thought she was just daydreaming. The lights would be on but nobody would be home. She’d fall over and we wouldn’t think anything of it beyond “she’s clumsy”.
‘She didn’t learn to talk at a normal rate so we took her to a speech therapist. They just said she was one of those kids who wouldn’t stop talking once she grew up.
‘But there would be times when other people would say things – the first time we really considered the possibility that something could be wrong was when her grandparents said she looked unusually vacant’
Adelei had another seizure while the family were driving on the M4 over the summer and she was taken to the Great Western Hospital in Swindon by ambulance.
She was transferred to the John Radcliffe Hospital in Oxford and spent ten days on the ward – at one point suffering 17 seizures in just one day.
Doctors carried out more tests and MRI scans and found the girl’s brain was underdeveloped.
The parents were then called in by doctors to receive the devastating news. Since the diagnosis, Adelei has been treated by the Great Ormond Street Hospital in London – the only specialist centre for the disease in the UK.
David said the doctors telling him his little girl had Batten’s felt like ‘an out of body experience’.
He added: ‘There’s no cure. No magic drugs that’ll let her live a normal life for a bit.
‘Ever since she was born, my only dream was to walk her down the aisle. I didn’t care about her being a doctor or a lawyer, I just wanted her to be happy and healthy.
‘All those dreams I had died in that moment. All I could think is was “Why me, why her? Why do we deserve this?”
‘I just couldn’t believe what I was hearing. Battens only affects around 40 kids in the UK, why did Addy have to be one of them?
‘I’ve only heard her say her own name twice, I’ve never had a conversation with her because she only has around 30 words – and now I never will.
‘I’ll never hear her say she that loves me – all those things you take for granted as a parent, gone in an instant.’
A fundraising page has been set up for the family to help pay for the costs of travelling to London for Adelei’s treatment. David and Hayley are planning to give up work to become full-time carers in the future.
Get in touch with our news team by emailing us at webnews@metro.co.uk.
For more stories like this, check our news page.