A mother has revealed her one-year-old daughter has been diagnosed with dementia after initially taking her to the doctors to check out her limp.
Abbe Baker first noticed the limp while playing with Bella at a park near their home in Gympie, north-east of the Sunshine Coast, on June 25.
Ms Baker and her husband Joshua took the young girl to Gympie Hospital for X-rays which showed no signs of fractures or sprains.
Doctors urged them to take Bella to the Sunshine Coast University Hospital for further tests, but were warned they likely wouldn’t get past emergency until the next day.
The parents decided to keep her at home overnight and see how she was feeling in the morning, only to find Bella in a much worse condition.
Her limp had become more severe and she was starting to lost strength in the left side of her body while experiencing periodic and painful muscle spasms.
Mr and Ms Baker raced Bella to Sunshine Coast Hospital where neurologists rapidly admitted her into the ward to monitor her for the next 24 hours.
They believed the infant was suffering from a viral infection affecting her nervous system and would heal soon enough, but her health continued to deteriorate.
A young family is reeling after their daughter Bella (right) was found to likely be suffering from childhood dementia, one of 100 conditions with a 100 per cent fatality rate
Bella underwent MRIs, blood tests, a lumbar puncture and genetic and metabolic testing at the hospital to try and get to the bottom of what was causing the stroke-like symptoms.
None of the tests came back positive while Bella’s strength continued to decline and she was forced to eat through a feeding tube which Ms Baker said was ‘horrible’.
Within two weeks, the ‘social butterfly’ had lost her ability to talk and became a shell of her former self.
‘She was a very smart cookie, she was saying five word sentences at a year old,’ Ms Baker told Daily Mail Australia.
‘She is a social butterfly, even still she loves having other little kids around.
‘Bella basically can only watch TV. We read her books, but that’s about all she can do now.’
They believed she may have Segawa Syndrome – a rare neurotransmitter disease leading to decreased dopamine levels – and reached out to a family in Western Australia whose child suffered from the disease for help.
They put her onto a local doctor who specialised in the area and the family were able to fly across the country to see her with the help of Mr Baker’s parents.
The doctor immediately told them Bella didn’t have Segawa Syndrome, but was instead most likely suffering from one of the more than 100 conditions that cause childhood dementia.
‘The doctor said she definitely has a neurological regressive disorder, which is basically another term for dementia,’ Ms Baker said.
Bella’s parents first realised something was wrong when they spotted her limping, but quickly lost strength to lift her arms, walk or swallow over the next two weeks (pictured, left)
With a narrower scale to test for, Bella underwent yet another round of intense tests to determine what type of dementia she has.
The results will be delivered in November with the parents facing the daunting task of possibly exploring palliative care options.
The sudden onset of the serious disease has ‘completely changed’ the lives of the young family.
‘We’re going to have to look at selling our house and moving back to the Sunshine Coast to be closer to the hospital because every time she gets sick she goes downhill so quick,’ Ms Baker said.
‘It makes it so hard because we’re an hour away from the hospital and Bella can’t sit in the car without screaming.
‘She screams because the positioning of the car seat makes her dystonia horrific, her whole body grows rigid and basically just spasms.’
The heartbroken mother said they’re in a ‘living hell’ and had grown accustomed to her daughter’s afflictions.
‘The fact that we’ve had to get numb to our child being in pain is just horrific,’ Ms Baker said.
‘Blood tests used to make me cry for her, but now I’m just so immune to it because she’s in pain 24/7. It’s non stop.’
A GoFundMe has been launched to help support the Baker Family through Bella’s health journey, raising over $13,000 in just under a week.
The Baker family (pictured) waited months and endured over 10 tests before a doctor said Bella ‘most likely’ had the reasonably rare disease
Gail Hilton, head of projects for the Childhood Dementia Initiative, said the Bakers’ story of a delayed diagnosis was all too common for families they aid.
‘Nearly every family will talk about the diagnostic odyssey, with some taking as long as three years,’ Ms Hilton said.
‘The delay means there’s a delay in clinical trials and support. It’s a big problem for this cohort.’
She said a lack of education and funding toward the conditions meant much of the public and even health professionals don’t know what to look for.
This is despite about 90 children dying from childhood dementia in Australia every year, comparable to fatality rates of childhood cancer.
However, children’s cancer has an 84 per cent survivability rate compared to childhood dementia’s zero.
It is also diagnosed in about one in every 2,900 kids, about the same rate as cystic fibrosis.
‘Each child and their family are told that they are going to have a shortened life span,’ Ms Hilton said.
The Childhood Dementia Initiative is campaigning for further funding toward greater research into treatments and care which has seem promising results so far.
