Meet Logan and Klair
“Logan currently attends TAFE and is studying photography but accessing the community in a wheelchair will always be a challenge. Since completing Year 12, Logan’s lost the routine of school and many of his peers have gone on to university or now have girlfriends.
His friends have gained independence but because of the progressive nature of Duchenne, Logan has become increasingly dependent on others.
Duchenne is a degenerative genetic muscle-wasting condition for which there is no cure. Life expectancy is typically in the mid-20s. It affects 1:5000 boys and is even more rare in girls.
Logan was born in the UK but the family emigrated to Perth in 2002 when he was 13 months old. Logan walked at 11 months and had great speech so the alarm bells didn’t go off for a long time. He was eventually diagnosed on 28th September 2007 (we’ll always remember that date), a month before his sixth birthday.
Logan lost the ability to walk when he was 14 and is progressively losing upper body function. Like many boys with Duchenne, he now uses a standing wheelchair.
We don’t have family here in Australia to help out so we rely on paid support. Logan requires special equipment and for someone to assist him when he goes to TAFE. Really it is Logan’s carers – and our family – who provide him with access to the community.
As a parent-carer, it’s tough when you work full time and outings or entertainment can get very expensive. My husband Justin and I went out for a night recently and booked a carer through an agency. We had a fabulous time until I got the $650 bill. It was a last-minute decision and was not in our plan but even when it is, there is never enough respite for families like ours.
Booking tickets to events for Logan or our family gets put in the too-hard basket. We have to check if there’s wheelchair accessibility which takes time and means premium tickets usually sell out before we can book. It’s always stressful… No one gets back to you about disabled seating and when they do, you rarely get to sit together.
There are usually only two wheelchair spots (with space for one support person) so unless you have a paid carer with you, the experience actually separates families.
When we go on holiday we take two vehicles which makes it doubly expensive. Accessible accommodation is hard to find and none of it is subsidised. If you can provide proof that you’ve paid over and above what an average family would pay for the accessible features of the accommodation, you’re able to claim some of that back but few families know this.
We’ve never taken a paid carer on holiday with us. I know some people do but sadly most families just don’t go away together because it’s too difficult. They go away separately or they stay home.
One of the frustrations is that there is so much to consider. Outings are planned with military precision and the logistics involved can be exhausting.
Logan would like to do more with his peers who have Duchenne but few venues have space for multiple wheelchairs to congregate. Going bowling together is an option, I guess but swimming is increasingly tricky. Not all swimming pools are heated and there are no hoists for Logan so then there’s the problem of manual handling.
I am a nurse and midwife, have managed hospitals and a charity, Duchenne Australia, that we founded in 2020, Burt even with my knowledge and experience, navigating the world of disability and advocating for community access is still enormously challenging.
There are about 1,000 people living with Duchenne in Australia. Some of them live into their 40s but they are the exception. It’s an amazing community who are resilient and achieve amazing things even against the adversity that Duchenne presents them. They just get on with things best they can, attend concerts and love their sports such as footy. You’ll often see them there all rugged up at a game.
Subsidised sporting tickets would be great for the community and going to a game together as a family would be also be amazing. Logan went to primary school with a young AFL star, Luke Jackson, who plays for Melbourne Demons. I know Logan would love to see him play one day.”