Striving for change

Published:
01/12/2021

 

Avalon mum of two, Gail, was shocked to learn about dementia in children and has made it her mission to spread awareness and strive for a positive change. 

Gail and her friend Megan Donnell co-founded the Childhood Dementia Initiative one year ago with the objective to inform others of this illness, which Gail says is ‘far more common than people realise’. 

According to Gail, one in 2,800 children are born with childhood dementia, which is more common than other well-known disorders including cystic fibrosis, and 700,000 children and young people are living with childhood dementia worldwide. 

“We launched the organisation in response to some research that showed that there were more than 70 different diseases that caused dementia in children,” Gail explains.

She tells Peninsula Living how her co- founder and CEO of the Childhood Dementia Initiative, Megan, has two children with childhood dementia. 

Megan is well-known locally for starting the Sanfilippo Children’s Foundation around eight years ago to spread awareness and raise funds for research. Sanfilippo mostly affects the brain and is a metabolic form of childhood dementia.

The Childhood Dementia Initiative focuses on two key priorities – galvanising the medical world to ensuring efficient research is being conducted and spreading awareness globally. 

“My role as head of services, care and quality of life is to really understand what is happening for families and advocate for better services,” Gail says. 

She explains that there has been ‘very little research’ in the space and no real progress has been made since these conditions were discovered. 

“It’s a hidden issue, not just in Australia, but in the world,” she says.

Once she immersed herself in learning about this critical condition, Gail says she felt it was important to spread the word and educate others to become a catalyst for change.

The initiative held the first ever Childhood Dementia Day in September this year, with the team reaching out to as many people as possible, including governments, health professionals, medical researchers, and the public. 

They also launched the ‘FACE it’ awareness campaign, where they asked adults to get messy with paint and post a picture online to ‘face’ the realities of childhood dementia. 

This awareness and fundraising enables the team to work with researchers to encourage further study and the trial of modern technologies for treatment, such as gene therapy. 

“The diseases that cause childhood dementia are rare genetic disorders that the child is often born with, but nobody necessarily knows that the child has that disorder until they start showing symptoms,” Gail explains.

She says the symptoms can become apparent when the child should be reaching certain developmental milestones, or it could be when they are older reaching their teenage years. 

“The major thing for me is that a similar number of children each year die of childhood cancer, and everybody has heard about cancer in children, but nobody has heard of childhood dementia,” Gail says. 

“Everyone that we talk to is first shocked that childhood dementia even exists and is then keen to figure out what their role is to make a difference.

“We need to keep rolling with that progress, which takes time, effort and money, so the more support we have for our work, the more that we can do.”  

If you would like to find out more information on the Childhood Dementia Initiative, or donate, visit https://www.childhooddementia.org/.

Author:
Jess Clarke, Journalist, Peninsula Living Magazine

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