It’s been three years since teenager Jason Winslow has walked. As a baby, people would compliment his parents on his “big beautiful calves”, which they thought were the result of him walking on his toes.
Despite his doctors’ reassurances, his mom, Christine, had a nagging suspicion that all was not okay with her son.
“As a baby, he didn’t crawl, and when eventually we got him to walk, he fell a lot. If he was walking in the lounge, he would have to hold on to the coffee table or something. We kept asking ourselves, ‘Why he isn’t doing this, or that?’ and all the doctors kept saying that we should be patient.”
When Jason was six, Christine took him to the doctor because he had a cold.
As they were leaving, the doctor called them back, and asked Jason to squat. When Christine said he was unable to, the doctor scribbled something on a Post-it note and handed it to her.
“Look this up”, he told her.
On the note he’d written a single word – Duchenne. Christine called her husband, Brohnsonn, who said he would google it. That evening he told her that it’s Duchenne muscular dystrophy (DMD), a genetic disorder that causes progressive muscle degeneration and weakness. There is no cure for it.
It felt like their world was crumbling, Christine tells YOU.
“It felt like [the] darkest, coldest day ever. It felt like everything around me was crumbling. Shock fear and confusion. How on earth could it be? A fatal muscle-wasting disease? Jason had the biggest calves so how could it be?”
As they were living in the Seychelles at the time, they had to fly to South Africa for Jason to be tested, and Christine clung to the hope that despite his symptoms matching the disorder, that the test results would be negative, and it would turn out to be something else that was treatable.
“Our perfect little family couldn’t possibly go through something as devastating as this.”
They had weeks of sleepless nights waiting for the test results. Doctors told them their son would no longer be able to walk in the next five or six years, and he would be unlikely to live into his thirties.
The family left their newly built home in the Seychelles and moved to Johannesburg to be closer to specialists, as there was none on the island. That big move was only the first of many hurdles the family had to deal with.
Every year Jason has to be examined and tested by multiple doctors – a paediatric neurologist, a cardiologist, a pulmonologist, an ophthalmologist, a nutritionist and a paediatric surgeon. He has to do hydrotherapy twice weekly and train twice a week with a biokineticist to keep his muscles moving. He needs to take steroids daily to maintain his muscle strength.
Jason attended a special-needs school, but now his mother home-schools him. “I gave up my job to care for Jason all day and night, that’s my job now. He was going to a special-needs school, but there are not really any schools which can properly cater to his needs,” she says.
Everything Jason does or that his family does with him has to be carefully planned. They need to ensure that he can be accommodated in his mobility scooter, if there are ramps, if there are accessible bathrooms and if there are sufficient parking bays for disabled users.
Jason’s circumstances have not dampened his spirits. Like many kids his age, he’s a fan of Star Wars movies, he loves cars, taking part in cycling races and reading.
He’s a cheerful young man who tells us he wants to be an engineer like his father, and he’s looking forward to moving out of his parents’ house, and getting married – as soon as he’s 18, he says with a laugh.
He’s a fighter, Christine says. “He is a little warrior. He’s so positive. He knows that he has special legs and that they’re different and that’s why he has his wheelchair and scooter.”
Christine runs a Facebook page, Jason’s Journey with Duchenne, to help other families so they don’t have to go through what they did.
“I’m trying to help families to identify the symptoms because we didn’t even know that this thing existed. When the doctors are saying you'll be okay, you trust them, thinking that they know best, but that's not always the case,” she says.
Jason has also been involved in his parents’ efforts to raise awareness about the condition. He has taken part in cycle races, including the 947 Cycle Challenge, the aQuellé Tour Durban, Amashova and the Tshwane Classic – all of which he did in his race chair which was attached to his dad’s bicycle.
Christine and Brohnsonn have tried not to bombard their son with too much information about his condition, and they try to help him remain positive, by answering his questions as they come up and having him listen to meditation tapes about healing and positivity at bedtime.
“For now, he tells everyone he’s Iron Man. He tries his best, and who knows, miracles can happen. He might walk one day,” Christine says, hopefully.
There is no cure for the condition, but there is new medication, recently approved by US medical authorities, that can help slow the progression of the muscle dystrophy. However, it only works on 8-10% of patients, and it costs between $750 000 (R12,7 million) to $1m (R16,9m) a year.
What is Duchenne muscular dystrophy?
It is a condition in which the body does not produce dystrophin – the protein which connects muscle fibre – which prevents the natural development of muscles.
Can it be detected during pregnancy?
Yes. The test is usually done once a family already has a child with Duchenne.
Who does it affect?
Mostly boys. It’s very rare for girls to be affected. It is a hereditary disorder, but one-third of Duchenne cases occur as a new mutation, with no history of it in the parents’ families.
Will there be a cure?
At this stage there is no cure. Researchers throughout the world are working on finding a cure. Should there be a definitive cure available, we can assure Duchenne patients that treatment will be available at Red Cross [War Memorial] Children's Hospital [in Cape Town].
*MDFSAprovides support for families living with Duchenne. Click here or call 021-590-7306.