Bella’s battle with Dystonia and suspected Dementia at 1.5yo

This GoFundMe is set up to support the beautiful Baker family as they continue an unfathomably hard journey with their darling daughter, Bella.

Until one unassuming day in June, Bella was a walking, talking, thriving 1.5 year old with the world at her feet. Her parents had welcomed her baby brother just 2 months prior, who she loved doting on. She woke from a nap one day after a morning at the park, and had suddenly lost all ability to walk or talk. This is where the family’s long journey for answers began.

Multiple traumatic hospital visits later, the only answer that the family had was a diagnosis of Dystonia, which is in fact a symptom rather than a root cause answer. The Dystonia left Bella completely disabled and in writhing pain, and the neurologists essentially hit a dead end with finding the true root cause of this symptom, leaving the family with no answers and treatment options to help their baby girl.

In a desperate search for answers, the family flew themselves to WA in the last week to see a neurologist who specialises in Dystonia. They hoped for answers and treatment options, and unfortunately her professional opinion was a devastating blow. This specialist believes Bella has Dementia, which has triggered the Dystonia. If this is the case, their next steps will be to explore palliative care options in Brisbane to keep Bella as comfortable as possible for the remainder of her life. This is an unfathomably heartbreaking prognosis; something no parent should have to face.

They will be staying in WA for another week to run tests and get definitive answers, and we pray this specialist got it wrong, but either way, this beautiful family’s journey ahead is going to be incredibly hard.

The money raised here is to help the family in any way possible. To cover medical fees, travel, time off work, nourishing food - everything and anything to help the family as they navigate this journey.