When little Bella was born, she was a completely normal girl. The family celebrated her first birthday with a big party. But since then nothing has been the same. Shortly after her birthday, Bella’s mother noticed an unusual limp. They go to the hospital. But without a diagnosis, they are sent home. A short time later, Bella can no longer walk or talk. The shock diagnosis: childhood dementia.
Bella was playing with her family in a park near their home in Gympie, northeast Sunshine Coast, Australia. Suddenly she began to limp. Abbe Baker and her husband Joshua took the little girl to Gympie Hospital for an X-ray. But the images showed no signs of broken bones or sprains.
Doctors urged Bella to be taken to Sunshine Coast University Hospital for further tests. But they warned parents they probably wouldn’t get past emergency care until the next day. So Abbe and Joshua decided to keep Bella at home overnight and see how she felt in the morning. However, after waking up they found Bella in a much worse condition.
Little girl suffers from childhood dementia
Her limp had gotten worse and she was beginning to lose strength on the left side of her body. At the same time, she suffered from regular, painful muscle cramps. The Bakers rushed to Sunshine Coast Hospital, where neurologists immediately admitted them to monitor them for the next 24 hours. They assumed that the baby was suffering from a viral infection that had affected his nervous system and that he would recover soon. But Bella’s health deteriorated noticeably.
Abbe and Joshua Baker with their daughter Bella and little sibling.Private
Bella underwent magnetic resonance imaging (MRI), blood tests, a lumbar puncture, and genetic and metabolic testing at the hospital to determine the cause of the stroke-like symptoms. None of the tests were positive as Bella’s strength continued to decline and she could only be fed through a feeding tube.
“She was a very clever girl, at one year old she could say five-word sentences,” Abbe Baker told the Courier Daily Mail in Brisbane. “Bella can basically only watch TV. We read books to her, but that’s pretty much all she can do now.”
A medical marathon followed, they flew across Australia. Bella’s family informs on a GoFundMe page about the girl’s fate. Donations are being collected there to help her. After many stays in the hospital, Bella was diagnosed with dystonia. This describes involuntary muscle contractions that can be long-lasting or alternating.
Bella can no longer walk or talk
A neurologist who specialized in dystonia then made a devastating diagnosis: “The doctor said she definitely had a neurological regression disorder, which is basically another term for dementia,” said Bella’s mom. The sudden onset of the serious illness “completely changed” the life of the young family.
“We need to think about selling our house and moving back to the Sunshine Coast to be closer to the hospital because every time she gets sick she gets worse so quickly,” Ms Baker said. The little girl will undergo further tests in the coming weeks to determine the severity and life expectancy. “We pray the specialist was wrong, but either way our road ahead will be tough.”
A doctor stands at a scan of a brain.Westend61/Imago
Childhood dementia is considered incurable
According to the German Center for Neurodegenerative Diseases (DZNE), there are now more than 250 different diseases known that can affect children’s cognitive abilities. These diseases are summarized under the term childhood dementia. Children often initially develop normally until symptoms appear and their cognitive abilities gradually become impaired.
Symptoms of Childhood Dementia:
- blindness
- Hearing and visual impairments
- Movement disorders
- Epileptic seizures
- behavioral problems
- Seizures
- Developmental disorders
The prognosis for affected children is poor: “The affected children become increasingly in need of care and ultimately bedridden. The diseases usually lead to death in the first two decades of life,” writes DZNE. The cause is considered to be hereditary genetic defects, but the parents are usually not affected themselves. Although treatments can support children and extend life expectancy, childhood dementia is not considered curable. Like dementia, childhood dementia also progresses at different rates among those affected.
This is also the case with Bella on the GoFundMe page, where 19,700 Australian dollars (equivalent to 11,700 euros) have now been donated. Bella’s mom wrote: “Hello everyone, just a quick update. Isabella has been placed in palliative care as we do not yet have a definitive diagnosis and therefore are not sure whether her life will be shortened by the disease. However, her health is still good at the moment.” ■
