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15 January 2020
By SARAH SCULLY
At first glance, Horsham’s Seth Rolins-Winfield is a happy-go-lucky eight-year-old boy who loves Star Wars, country music and hanging out with his mates.
But look a little closer and you will see the impact of the cruel hand he has been dealt.
His mind might be sharp, but Seth’s body is failing him every day.
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The Horsham Primary School student has Duchenne muscular dystrophy, a rare disease affecting about one in 3500 live male births throughout the world.
Lack of the protein dystrophin causes muscles to break down, leading to progressive difficulty with walking and general mobility, and later on, affects breathing and the heart.
There is no cure, although researchers are continuing to look for one.
Seth’s mother Courtney Rolins knew her son was ‘different’ from an early age.
Although he was diagnosed aged 4, Mrs Rolins said she suspected something was wrong long before that.
“Seth didn’t walk until he was nearly two,” she said.
“He could talk and he hit all his other milestones, except for walking and fine-motor skills.
“It took a long time for us to work out what was wrong. I felt like I went to every doctor in the region asking for advice, but everyone kept telling me he was just delayed. I kept saying, ‘how can he be delayed when he is hitting all his milestones, except his motor skills?’.
“Eventually, we got referred to a paediatrician, who noticed Seth’s large calf muscles and straight away thought of muscular dystrophy.”
Seth underwent tests at the Royal Children’s Hospital, but despite her intuition telling her something was wrong, Mrs Rolins was not prepared for the results.
“When they told me he had Duchenne muscular dystrophy it really was a shock, because you don’t think it’s ever going to be something bad,” she said.
“Once we got the diagnosis, we researched it. I was still not really aware of what we had been told. Now that he is getting older we know a lot more about the disease and the direction it is going to take.
“They say most boys with Duchenne’s don’t continue on past the age of 20.
“But these days, with all the medical research, some are living beyond that stage.”
Children with DMD generally lose the ability to walk by 12 years of age and become reliant on a wheelchair.
Mrs Rolins said her son’s deterioration was measured in ‘seconds’.
“He has to run 10 metres with no shoes or socks on, as fast as he can,” she said.
“On January 30, 2019, he ran 10 metres in seven seconds. On November 20, he ran it in 8.2 seconds.
“Once he gets to about 12 seconds, the hospital will tell us he needs to use his chair full-time.”
Mrs Rolins said Seth was aware of his limitations, yet still became upset when he could not keep up with his friends.
She said if other children climbed on play equipment at a playground, Seth knew he could not join them.
“If there isn’t anyone else at the playground we can help him to go up the steps, but he moves very slowly,” she said.
“A lot of the time he will just move around on the ground and play.
“It is so cruel. The hardest part is knowing he was born to be able to do all of these things.”
Mrs Rolins said despite his condition, Seth was a happy, fun-loving boy.
“He’s like a duck, it runs off his back like water,” she said.
“He doesn’t know everything and he doesn’t want to know everything, so I feel like we are going to have more trouble as he gets older.
“But Seth knows what his wheelchair is for. He knows his limitations – but you can’t stop him. He is so happy, he makes the best of everything.
“Eventually his wheelchair and mobility scooter will become his legs, but I know he will make the most of it.”
Seth has a powered wheelchair on the way, but as his condition progresses, he will need further assistance to move around.
The Rolins family is in need of a wheelchair-accessible vehicle for two adults and four children, yet the cost is proving prohibitive.
Mrs Rolins has decided to host a family fun day and trivia night next month to raise money for a new vehicle.
“Seth’s new chair will arrive on January 28, but we don’t have a way to get it anywhere. He can’t even go on the school bus because it doesn’t have wheelchair access, only steps,” Mrs Rolins said.
“At the moment we have to help him in and out of the car. He struggles to step up and down because he doesn’t have the leg strength or upper-body strength to get in and out of the car by himself.
“It would be so much easier for him if he could just glide in and out in his wheelchair.”
Mrs Rolins said she reached out to a few organisations for help to fund a new vehicle, but was unsuccessful.
A group of friends decided to band together, creating a family fun day at 4th Horsham Scout Group headquarters in Baillie Street on February 22.
The Seth’s Force Community Family Fun Day will run from 10am to 4pm and include live music, a sausage sizzle, market stalls, face-painting and a jumping castle. Entry is free with a gold coin donation for activities.
Trivia With A Twist will run a trivia night at Horsham Table Tennis Association in Harriet Street from 7pm that night.
Tickets cost $15 and bookings are essential by calling Courtney on 0400 255 779.
A highlight of the evening will be the auctioning of a guitar donated by Australian country music superstar, Lee Kernaghan.
“Lee is Seth’s favourite singer, so we reached out to him and he very generously donated one of his guitars,” Mrs Rolins said.
“We are hoping that will generate a bit of interest, because Lee is very popular. It’s going to be a great night and hopefully we can get a good crowd along.”
Mrs Rolins said regional businesses had also donated prizes for raffles.
She said she was grateful for the support, even though she found it difficult to reach out for help.
“I’m the kind of person who would go without to help someone in need,” she said.
“But we are not doing this for ourselves, we are doing it for our son – we wouldn’t reach out and ask for help unless we really needed it.”
People can search Seth’s Force – Community Family Fun Day on Facebook for more information about the event or to register a market stall.
The entire January 15, 2020 edition of The Weekly Advertiser is available online. READ IT HERE!