A mother has revealed that her one-year-old daughter was diagnosed with dementia after initially taking her to the doctor to have her limp checked.
Abbe Baker first noticed the limp while playing with Bella in a park near her home in Gympie, northeast of the Sunshine Coast, on June 25.
Mrs Baker and her husband Joshua took the girl to Gympie Hospital for X-rays which showed no signs of fractures or sprains.
Doctors urged them to take Bella to Sunshine Coast University Hospital for further tests but warned they would probably not move beyond the emergency room until the next day.
The parents decided to keep her home overnight and see how she felt in the morning, only to find Bella in a much worse condition.
His limp had become more severe and he was beginning to lose strength on the left side of his body while experiencing periodic, painful muscle spasms.
Mr and Mrs Baker rushed Bella to Sunshine Coast Hospital where neurologists rushed her into the ward for monitoring over the next 24 hours.
They believed the girl was suffering from a viral infection affecting her nervous system and that she would recover soon, but her health continued to deteriorate.
A young family is in shock after it was discovered their daughter Bella (right) was likely suffering from childhood dementia, one of 100 diseases with a 100 per cent mortality rate.
Bella underwent MRI scans, blood tests, a spinal tap and genetic and metabolic testing at the hospital to try to get to the bottom of the cause of her 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 speak and had become a shadow of her former self.
“She was a very bright child, she was saying five-word sentences by the time she was a year old,” Baker told Daily Mail Australia.
‘She is a social butterfly, yet she loves having other young children around.
“Bella can basically only watch TV. We read her books to her, but that’s all she can do right now.”
They believed he might have Segawa syndrome (a rare neurotransmitter disorder that results in decreased levels of dopamine) and contacted a family in Western Australia whose son had the condition for help.
She was put in touch with a local doctor who specialized in the area and the family was able to fly across the country to see her with the help of Mr. Baker’s parents.
The doctor immediately told them that Bella did not have Segawa syndrome but rather one of more than 100 diseases that cause childhood dementia.
“The doctor said he definitely has a regressive neurological disorder, which is basically another term for dementia,” Baker said.
Bella’s parents realised something was wrong when they saw her limping, but she quickly lost the strength to lift her arms, walk or swallow over the next two weeks (pictured, left)
With a more limited testing scale, Bella underwent another round of intense testing to determine what type of dementia she has.
The results will be delivered in November and parents will face the difficult task of exploring possible palliative care options.
The sudden onset of the serious illness has “completely changed” the life of the young family.
“We’re going to have to consider selling our house and moving back to the Sunshine Coast to be closer to the hospital because every time she gets sick her condition gets worse very quickly,” Baker said.
“It’s very difficult because we are an hour away from the hospital and Bella can’t sit in the car without screaming.
‘She screams because the position of the car seat gives her horrible dystonia, her whole body goes stiff and she basically just has spasms.’
The heartbroken mother said they were living a “living hell” and had become accustomed to her daughter’s woes.
“The fact that we have had to become numb to our son’s pain is just horrific,” Ms Baker said.
“Blood tests used to make me cry for her, but now I’m immune to them because she suffers all the time, seven days a week. She doesn’t stop.”
TO GoFundMe It was 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 more than 10 tests before a doctor said Bella “most likely” had the reasonably rare condition.
Gail Hilton, project director for the Childhood Dementia Initiative, said the Bakers’ story of a late diagnosis was all too common for the families they help.
“Almost every family will talk about the odyssey of diagnosis, and some families can go through it for up to three years,” Hilton said.
“The delay means there is a delay in clinical trials and support. It’s a big problem for this cohort.”
She said a lack of education and funding for these conditions means much of the public and even health professionals don’t know what to look out for.
This is despite the fact that in Australia around 90 children die each year from childhood dementia, a rate comparable to the mortality rate from childhood cancer.
However, childhood cancer has an 84 percent survival rate, compared to zero for childhood dementia.
It is also diagnosed in about one in every 2,900 children, about the same rate as cystic fibrosis.
“Every child and their family are told they will have a shorter life,” Hilton said.
The Childhood Dementia Initiative is campaigning for more funding for further research into treatments and care which have so far yielded promising results.
