“Being sisters means you always have backup.”
Jamie and Sam are sisters, both in their 20’s, who are working to ditch the stigma that comes with having a disability once and for all.
Diagnosed with Friedreich’s Ataxia, a rare degenerative neuromuscular disorder in their teens, Jamie and Sam are part of the 1 in 30,000 people in Australia and New Zealand currently facing this disability. Currently, there is no known treatment or cure for Friedreich’s Ataxia but the girls are determined to live their young lives to the best of their ability.
Unfortunately, appropriate and supported housing is one of the greatest areas of unmet need for people with disabilities in Australia. As Jamie’s condition deteriorated, she needed to move into a facility that better catered to her care needs. For a young woman in her 20’s, this facility was not a suitable place for her to live.
“It was very sad to see a bunch of high care needs people being treated like they were their disability. They never had any opportunity to break away from that, and it was really heartbreaking for me because I’ve been raised in a family where disability does not define me.” – Jamie
Sam had also struggled to find somewhere that gave her the independence that she craved as a young adult. Unable to move out of the family home because of limited rental options with appropriate accessibility, she became frustrated with the lack of choice and opportunity.
“I explored options like moving out with friends but there were always problems with finding somewhere accessible with a disabled bathroom and I need a bit of help from the carers. I really felt like I had no options – I was 25 and still living at home.” – Sam
Despite their care needs changing and evolving with their condition, these girls are not the kind to give up. Both Jamie and Sam are working part time and are heavily involved with advocacy in the disability sector. They love to travel, write and socialise with their friends just like any other 20 year old girls do. These girls are not letting their disability hold them back.
“Neither of us wants to lie in bed all day watching TV we still want to go out and achieve things we don’t think that our disability should hold us back.” – Jamie
After a long search Sam and Jamie moved into WesleyCare Sinnamon Park, built by Youngcare, alongside Wesley Mission Queensland, in 2018. With a condition that presents a future so uncertain, now they have the peace of mind that comes with a reliable and appropriate place to call home.
“I’d have no idea what to do. I’m not high needs enough to go into a nursing home, but I’m not low care needs enough to live independently.” – Sam
“That’s the best thing about being here – privacy and independence.” – Jamie
Now, these sisters are able to live the young lives that they deserve, in a place that gives them the space and independence to be the creative young women that they are. They have noticed a significant improvement in their relationship with their family, who are now able to be their loved ones, rather than their carers. The girls are also excited to have all of the friends over that they want; they have the freedom to be adults.