The Weekly Advertiser – Wednesday, January 15, 2020

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Vol.22 18No. No.27 27 Vol.

FREERADIO PUBLICATION A FREE PUBLICATION FROM YOUR LOCAL STATIONS 3WM AND MIXXFM

13, 2020 2016 Wednesday, January 15,

‘You can’t stop Seth’ A

BY SARAH SCULLY

t first glance, Horsham’s Seth RolinsWinfield is a happy-go-lucky eightyear-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. 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.”

Limitations

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, funloving 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 wheelchairaccessible 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. Continued page 3

Horsham’s Courtney Rolins will host a family fun day and trivia night next month to raise money for a wheelchairaccessible vehicle for her son, Seth. A highlight of the fundraising activities will be the auctioning of a guitar donated by Seth’s favourite singer, Australian country music superstar, Lee Kernaghan. Picture: PAUL CARRACHER

IN THIS ISSUE • Changes to bus services • Back-to-school feature • Association to host T20 trial

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