The Perth family’s battle with hypomyelinating leukodystrophy as daughters were diagnosed with childhood dementia
The family’s tragic discovery after two of their daughters were diagnosed with the extremely rare disease ‘childhood dementia’ while two more of their children carry the terminal illness
- Perth sisters Abby Byatt, 5, and Leah Byatt, 3, have been diagnosed with a terminal illness
- Batten’s CLN7 is a rare neurodegenerative disease with no known cure
- Abby also has hypomyelinating leukodystrophy, in which the brain eventually fails
- Michelle Hunt & Brian Byatt found that younger children also carry Battens
A family of six faces an uncertain future after two of their girls have been diagnosed with a rare terminal illness, dubbed “childhood dementia” by medical experts.
Perth’s Michelle Hunt and Brian Byatt also discovered this week that two of their other young children are carriers of the disease.
Abby Byatt, 5, was the first child in the family to develop Battens CLN7, a neurodegenerative disorder 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 sight… (there will be) violent outbursts as it goes on.”
A Perth family of six faces an uncertain future after two of their girls were diagnosed with a rare terminal illness, which medical experts have dubbed ‘childhood dementia’ (pictured Michelle Hunt and Brian Byatt with their four children).
Abby, 5, and Leah, 3, (pictured) have been diagnosed with Battens CLN7, a neurodegenerative disease that causes seizures and loss of coordination
Already confined to a wheelchair, Abby Byatt 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, who was just three years old, was also diagnosed with Battens.
An MRI will confirm if she has the same condition as her older sibling.
The devastated couple took another blow when doctors revealed Brayden, 7, and Page, 1, could pass Battens CLN7 on to their own children as they are carriers.
Tragically, young Abby is already in palliative care and Leah may well follow the same path.
“It was the damn show of a year,” Mr. Byatt told dem Western Australian. “It turned our lives upside down … you never know what the day will bring.”
While they can’t thank that Perth Children’s Hospital enough for their continued care that The National Disability Insurance Scheme has frustrated the family.
The couple, who live in Forrestfield, south-east Perth, are still waiting for Abby’s wheelchair from NDIS after six months and “mountains” of paperwork.
They were forced to borrow one from Perth Children’s Hospital, Mr Byatt said he was “p*** poor”.
To help the family with their many struggles, a friend recently created a Facebook to blog to create an awareness of what the girls endure.
There’s also GoFundMe side to help with daily expenses, with a goal of $50,000 for the family.
The couple were also told by doctors in March that Brayden, 7, and Page, 1, will pass on Battens CLN7 to their own children in the future as they are carriers
Mr Byatt told Daily Mail Australia he wanted to “spread the word out there” to help his babies