Greta Gowans is only 6 but has being diagnosed with a form of dementia, Rett syndrome
Dementia in adults is devastating enough but when it comes to babies and children, it is almost too confronting for us to talk about. Here is one family’s story.
This week marks three years since gorgeous Greta Gowans, then aged three, was diagnosed with a rare neurodevelopmental disorder known as Rett syndrome.
The disorder affects girls almost exclusively and, sadly, its symptoms are described as a combination of cerebral palsy, epilepsy, autism and Parkinson’s. It is also a form of childhood dementia.
Greta’s mum, Olivia, a midwife, said the degenerative nature of the condition – the result of a random gene mutation – was among its most heartbreaking aspects.
“We don’t know what Greta’s future holds for her, at the moment she can walk but that has deteriorated over the past six weeks, so she is getting a bit wobbly … it is horrible,” she said.
The six-year-old is non-verbal, has epilepsy, scoliosis and doesn’t have purposeful use of her hands.
“Her life is very complex but you get what you get and have to roll with the punches and do the best you can … she is generally just a happy little girl and we are grateful for that,” Ms Gowans said.
“Not being able to communicate with her, to just ask her whether she wants jam or peanut butter on her toast, is hard. She gets frustrated at times when she wants to tell us something and she can’t – that breaks our hearts.”
Little Greta is helped along by her proud and adoring big brother, Fergus, who is 11.
“Fergus is amazing with her, he is so tolerant and kind, reads to her, advocates for her and makes sure she is safe all the time,” their proud mum said.
“Rett girls can talk with their eyes, so if anyone gives her the time and looks into her eyes she will engage with them … Greta is a happy little girl, she lights up the room.
“I try to make things as normal as possible (for her) by going for bike rides together, in a modified bike, trips to the beach and lots of interaction with family and friends.”
Ms Gowans has welcomed news of a $75,000 grant from The Hospital Research Foundation (HRF) Group aimed at helping raise awareness about the debilitating and fatal condition in children.
“Dementia is quite a confronting word to use in relation to children but it is also real,” Ms Gowans said.
“I believe that knowledge is power … more awareness is needed and money for research is critical.
“I can’t even imagine hearing Greta speak – that would be a dream come true.”
Childhood Dementia Initiative chief executive Megan Donnell agreed raising awareness of rare diseases and syndromes was vital.
“This grant is about bringing the voices of families whose children have dementia to the forefront,” she said.
“(They) are critical in shaping the way we as a community respond to and support their needs.”
HRF chief executive Paul Flynn said his charity believed “everyone deserves someone fighting for their health”.
“Access to disease information, particularly when the diagnosis is so heartbreaking, is a basic yet essential healthcare service,” he said.
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