Funds to help children like 6-year-old Greta
Transforming the quality of life, care and research for hundreds of children suffering dementia, caused by more than 70 genetic disorders, will be the focus of a $75,000 grant from The Hospital Research Foundation (THRF) Group.
The funding will help increase awareness about the debilitating and fatal condition that impacts around 1 in 2,800 babies and their loved ones in Australia every year. There are currently around 2,300 children living with dementia with a devastating prognosis that many of them will not reach adulthood.
This recently awarded grant will go directly towards building patient and research networks that will help identify and connect families, supporting and empowering them in a community of carers of childhood dementia.
Megan Donnell, Director and CEO of the Childhood Dementia Initiative said THRF Group’s funding will help raise critical awareness.
“We know that the voices of families who are experiencing childhood dementia are critical in shaping the way we as a community respond and support their needs,” Megan said.
“This grant is about bringing the voices of families whose children have dementia to the forefront. It will help families access and connect to appropriate support in a timely manner.”
“The more people who know about childhood dementia and the impact on the child’s welfare as well as the family’s, the better we can respond to their needs, drastically impacting the quality of their lives.”
THRF Group has a strong commitment to both neurological conditions and end-of-life care, with CEO Paul Flynn saying the organisation felt it was important to help support the families of children diagnosed with a life-limiting condition and future research.
“At The Hospital Research Foundation Group, we believe everyone deserves someone fighting for their health,” Paul said.
“We are passionate about lending our support, where possible, to other charities who like us are committed to making a meaningful difference in people’s lives when they need it most.
“Access to disease information, particularly when the diagnosis is so heartbreaking, is a basic yet essential healthcare service. We’re always grateful to our generous supporters for enabling us to fund this unmet need in the community.”
Funding to help children like 6-year-old Greta
Greta was diagnosed with Rett Syndrome when she was just three years old after her mother Olivia noticed Greta wasn’t achieving her developmental milestones.
“I had done a lot of research … so I wasn’t surprised when the geneticist called me to confirm the diagnosis, but my heart still stopped. I suddenly knew life was never going to be normal and that Greta had some massive challenges ahead. We all did.”
Greta is non-verbal, has epilepsy, scoliosis and doesn’t have purposeful use of her hands. Her walking is starting to be compromised and she is unable to follow directions or commands.
“Despite all of this, Greta always manages to light up the room with her smile, is cheeky and talks with her eyes through an eye gaze device that tracks eye movements to communicate.”
Greta’s 11-year-old brother Fergus is supportive of everything Greta does. He plays and reads to her and loves making her laugh and giggle.
“I want Greta to be included in ‘normal’ life. I try to make things as normal as possible by going for bike rides together, in a modified bike, trips to the beach, and lots of interaction with family and friends. They are our village.
“This generous grant given to the Childhood Dementia Initiative from The Hospital Research Foundation is amazing. Firstly, I believe that knowledge is power. The more people who are aware of these rare diseases and syndromes, the more power they have in the community.
“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 is more common than people realise
It is estimated that 1 in 2,800 children are born with a disorder that, if untreated, leads to childhood dementia. Its prevalence and incidence is similar to that of motor neurone disease and cystic fibrosis.
There are over 70 types of childhood dementia and fewer than 5% of them have effective treatments. Tragically, none have a cure and at least 90 children will die in Australia every year.
Disorders that cause childhood dementia are neurodegenerative (debilitating and progressive) and impair mental function. They are complex disorders, with high care needs and they cause a poor quality of life that affects the entire family. Sadly, in nearly all cases, the child will die before reaching adulthood.
As the research grows, there is a high likelihood that other conditions will be linked to childhood dementia, please contact the childhood dementia initiative for further information. https://www.childhooddementia.org/