Compassionate and community minded, Brita and Zy Phillips had always regarded themselves as having empathy for the challenges encountered by people living with physical disability.
But the Caversham couple’s awareness of ‘how superficial their empathy had been,’ grew markedly earlier this year after their two-year-old son, Ari was diagnosed as having a rare gene mutation resulting in congenital muscular dystrophy.
Ari, who is one of only two people in Western Australia with the same type of muscular dystrophy, will never walk.
Bright, fun loving and adventurous, Ari, who shuffles around the house with the assistance of his four-year-old brother Ashton, currently seems unhampered by the mobility restrictions he faces.
“At home, Ari plays freely with his brother, but every time we leave the house we can’t help but notice the obstacles that prevent children like him from fully participating in play and other aspects of social life,” says Brita.
Joining the MDWA community straight after receiving Ari’s diagnosis, they immediately became enthusiastic fundraisers and advocates for those living with muscular dystrophy.
Together with Muscular Dystrophy WA, (MDWA) Zy and Brita will advocate for purpose-built equipment to be installed at playgrounds across Western Australia.
Ari uses a standing frame and should be getting his electric wheelchair soon, but already the family finds that lack of appropriate public facilities, particularly at playgrounds and recreation centres, exclude him from play.
“Some parks have wheelchair swings but they are designed for manual wheelchairs and not electric, so once Ari gets his wheelchair it isn’t an option for him,” says Zy.
“Overall, we have learnt that wheelchair access is far more limited than you might expect. People with mobility restrictions have way more challenges in getting through their day than we had ever imagined,” he says.
Acknowledging their emotional, physical and financial challenges, Zy and Brita say that with the help of their supportive family and friends and MDWA, they expect Ari to enjoy a happy and fulfilled life.
“Luckily for us, I found MDWA online when Ari was diagnosed. We were connected with people who could help us quickly. It’s been a practical and emotional lifeline.
“Along with being introduced to other families, community services manager Piper Marsh has helped us navigate our way through things like an application for NDIS (National Disability Insurance Scheme) funding to assist us with financing equipment for Ari.
“It’s also been great to take part in social events and camps. There’s nothing quite like connecting with people who are going through the same thing,” says Brita.
To learn more about Muscular Dystrophy WA, or how you can help, visit the website at www.mdwa.org.au