Duchenne diagnosis: ‘Every hope I had for the future changed’
Two brothers, accompanied by their proud mum Kim, will be among those stepping up to face Duchenne muscular dystrophy head-on in this year’s walk towards a cure in South Australia
For Adelaide mum Kim Marsden, one thing in the world makes her happier than anything else.
“Watching my boys float in the pool when we’re on holidays in Renmark (in South Australia’s Riverland),” she says with a smile.
“They love the water so much, if they had gills, they’d live in it!”
For Kiyan, 15, and 13-year-old Jaiden, who both live with the devastating and fatal genetic condition Duchenne muscular dystrophy, being in water is the only time their bodies move freely.
“They can stretch out and move around — Jaiden hasn’t walked for three years now and being in water is the only place he feels freedom,” Kim says.
When Duchenne was detected
It was a routine check-up for glandular fever when Kiyan was four that led to his diagnosis with Duchenne, the most common muscle condition of childhood, which affects one in every 5000 boys worldwide and, very rarely, girls.
“We both had blood tests because we’d been sick,” Kim explains.
“Kiyan’s results caused some concern and I was sent to a neurologist.
“We did more tests and when I was told it was Duchenne, all I could think was, ‘I’ve got another son’.
“They did the tests and Jaiden was also positive.
“To have two boys, both with Duchenne, every hope I had for the future changed right in that moment.”
For Kim, a single mum since the boys were very young, there was only one way forward.
“We just had to get on,” she says.
“I want the boys to have the best life they possibly can while they can.
“It’s one of those situations that when you stand outside it, you don’t think you’re going to cope.
“But when you’re a mum, a parent, you just find a way.”
Living with the Duchenne diagnosis
The former air hostess, who now works in retail, has faced many challenges, including adapting her home to accommodate the boys’ reduced mobility, managing frequent hospital visits and providing emotional support for the boys as they navigate the progressive disease.
“The boys go to Unley High School where there’s a Link program that supports students with physical disabilities to participate in mainstream classes, with nurses if they need them,” Kim says.
“They started in wheelchairs when they were around six but it was hard for me to push them both, so they progressed to powered wheelchairs and they drive them better than most people drive cars!
“Kiyan is my cook. His Christmas present last year was saffron; that’s what he asked for.
“I’m always buying him spices and cookbooks.
“And Jaiden is the techie. He loves watching videos and playing games on his (Nintendo) Switch.”
Kim says she’s indebted to her parents, who live nearby and help when they can, and also to the Save Our Sons Duchenne Foundation, the peak body in Australia for those living with Duchenne and Becker muscular dystrophy.
Helped by the Save Our Sons Foundation
“Save Our Sons have been amazing,” Kim says.
“They’ve helped me with equipment for the boys before I even knew I needed it.
“They go above and beyond every time.
“They do so much advocating for families of children with Duchenne.”
In March, Kim and her sons will join other families in the Walk 4 Duchenne to raise awareness of the condition, visiting Unley High School among a number of other schools.
The annual walk, now in its 10th year and supported by Chemist Warehouse, is one of the foundation’s biggest fundraisers, supporting research, clinical trials, medical equipment and specialist nurses in hospitals across Australia and a scholarship program and resources for affected children and their families.
Chemist Warehouse backing the search for a cure
Chemist Warehouse director Mario Tascone says the pharmacy giant has been a proud supporter of Save Our Sons since 2016.
“We’re passionate about helping to raise much-needed funds and awareness for all of those affected by Duchenne and Becker muscular dystrophy — together we stand strong, determined to find a cure,” Mario says.
It’s a hope that Kim shares with every fibre of her being.
“I’ve always been direct and told the boys the truth as the disease has progressed so they know and understand what they’re dealing with,” she says.
“It’s not easy. Every single part of me hopes for a cure one day.”
More on Save Our Sons and Duchenne:
- Million-dollar windfall to help Save Our Sons
- Save Our Sons: A dad’s quest to cure his child’s illness reaps $850K
- ‘In one second your whole world is turned inside out’
- Save our Sons fundraiser offers hope for disease cure
The 2024 Walk 4 Duchenne will be held in SA from March 3-7. Visit saveoursons.org.au
Written by Liz McGrath.
