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A family of six face an uncertain future after two of their girls were diagnosed with a rare terminal illness branded ‘childhood dementia‘ by medical experts.
Michelle Hunt and Brian Byatt, from Perth, also discovered this week that two of their other young children are carriers of the disease.
Abby Byatt, 5, was the first youngster in the family to develop Battens CLN7, a neurodegenerative condition that causes seizures and loss of coordination.
She had previously been diagnosed with hypomyelinating leukodystrophy, which causes the brain and nervous system to eventually lose function.
‘They classify it (Battens CLN7) as childhood dementia. She’s (already) forgetting people and things,’ Ms Hunt said.
‘Hallucinations, loss of eyesight…(there will be) violent outbursts as it goes on.’
A family of six from Perth face an uncertain future after two of their girls were diagnosed with a rare terminal illness labelled by medical experts as ‘childhood dementia’ (pictured, Michelle Hunt and Brian Byatt with their four kids)
Both Abby, 5, and Leah, 3, (pictured) have been diagnosed with Battens CLN7, a neurodegenerative condition that causes seizures and loss of coordination
Abby Byatt is already wheelchair bound and also suffers from hypomyelinating leukodystrophy, which causes the brain and nervous system to eventually lose function
A few days ago Abby’s younger sister Leah, aged just three, was also diagnosed with Battens.
An MRI will confirm if she has the same condition as her older sibling.
The devastated couple were hit by a further blow when doctors revealed Brayden, 7, and Page, 1, may pass on Battens CLN7 to their own children as they are carriers.
Tragically, young Abby is already in palliative care and Leah may follow the same path.
‘It’s been a s*** show of a year,’ Mr Byatt told the West Australian. ‘It’s turned our lives upside down…you never know what the day is going to bring.’
While they can’t thank the Perth Children’s Hospital enough for their continual care, the National Disability Insurance Scheme has frustrated the family.
The couple, who live at Forrestfield in Perth’s south-east, are still waiting for Abby’s wheelchair from NDIS after six months and ‘mountains’ of paperwork.
They have been forced to borrow one from the Perth Children’s Hospital, Mr Byatt said was ‘p*** poor.’
To help the family with their numerous struggles, a friend recently created a Facebook blog to generate awareness of what the girls are enduring.
There is also a GoFundMe page to help with everyday costs, with a target of $50,000 for the family.
The couple were also told told by doctors in March Brayden, 7, and Page, 1, will eventually pass on Battens CLN7 to their own children in the future as they are carriers
Mr Byatt told Daily Mail Australia he wanted to ‘get the word out there’ to help his babies
Source: DailyMail
