Maya Pinn wears many different hats but they all have one thing in common – using her own experience to help others.
The Narre Warren 25-year-old is a solo mum to Lloyd, 6, and Elsie, 4, and a staunch advocate in the disability sector.
“My advocacy work came about after I had to advocate for two years to get genetic testing for my son, Lloyd,” she said.
“I had done every test known to mankind to find out why he had such a severe global developmental delay.
“The average diagnostic odyssey for receiving a diagnosis is seven to nine years, and 30 percent of children with a rare genetic disease pass away before they’re 5.
“So I think it’s so important that these are caught early on.
“If there’s going to be a life-limiting condition, and there’s no cure right now, then how can we improve the quality of life for the child and their families so that they have the best five years?”
Maya’s experience led her to work with Syndromes Without a Name (SWAN), tackling issues like discrimination against genetic testing in life insurance, which stops life insurance companies from increasing premiums or denying insurance due to genetic tests.
She advocates on NDIS issues and creating inclusive playgrounds with the Association for Children with a Disability (ACD).
“Lloyd is in a wheelchair, is non-verbal, has a severe intellectual disability, and is PEG-fed now – has completely different needs from my four-year-old, who is neurotypical and can walk, talk and run,” she said.
“So, how do you include them both in the park at the same time?
“And it’s not just my family that I’m providing this sort of feedback for.
“Trying to keep everything as inclusive and accessible as possible not only suits me but the families around me.”
Maya also runs adaptive clothing business RareWear to “help parents lessen the stress for simple daily tasks like getting their kids ready in the morning”.
“A lot of families don’t even know that things can be easier,” she said.
“So I hope to make mine and their lives easier so we have more time for fun and connection.”
She founded RareWear while studying a Bachelor of Health Science and working at a local auto retail store 25 hours a week.
Maya was also volunteering with the Royal Children’s Hospital Family Advisory Council and at the Murdoch Children’s Research Institute, where she is now doing her honours with The University of Melbourne on increasing diversity in Australian genomics.
“I try to do as much as possible,” she said.
“I’m not good at being bored, or relaxing for that matter, so I’m very strategic in how I plan my days, weeks, and months.
“I’m also really lucky to have such a great community around me in terms of my family, with my parents and sister, and also my best friend, work colleagues, and, of course, groups like SWAN and ACD, who have always been really supportive, especially when I need disability-specific advice.
“And I have so many calendars, it’s not even funny.
“I have two on my phone, one on my email, two physical calendars in my kitchen, and I do a weekly one as well.
“But the key for me in balancing everything is passion.
“When you’re passionate about it, it doesn’t feel like work.”
Maya’s extraordinary efforts earned her the 2024 Young Citizen of the Year title in the Casey Community Awards.
“I think my win is a great opportunity to really make a big impact on families in the City of Casey predominantly, but also statewide and nationally, by building a community for children like mine,” she said.
“I know what it’s like to feel isolated, so I hope to lessen the mental health impact on families and help them find more people like them.
“Because from my standpoint and experience, we can do a lot better with disability inclusion and it doesn’t have to be hard.”
– By Emma Xerri
