Living with Duchenne muscular dystrophy is difficult. I understand it because I live this reality every day. Duchenne muscular dystrophy forces you to live the moment and enjoy it even more.
Christine Winslow from Johannesburg South Africa shared her story on the Facebook page of her son, Jason, who lives with DMD. She wants this to help one or more families and to reassure those who live the same thing. The Force supports this excellent initiative. With the approval of Christine Winslow, La Force shares her story with you today.
We invite you to share your story with us here.
“My GP scribbled the word “Duchenne” on a Post-it and told me to go home and read about it. That was the day our lives changed forever.”-Christine Winslow
Raising my son with Duchenne
Christine had a problematic pregnancy. Jason arrived two weeks earlier. At 7:28 pm, Jason Parker Winslow was born at Victoria Hospital in Seychelles. She would never have known that her baby would be born with a fatal muscle disease like DMD. As Jason grew up, he had no muscle tone, and his parents had to put pillows behind him when he played with his toys. Jason’s parents had noticed that when he interacted with children of his age, he didn’t babble like them. He wasn’t trying to crawl and was rather happy to play alone.
“I remember thinking, is it my fault? Perhaps I wasn’t doing the right thing or teaching and helping my child correctly.”-Christine Winslow
Something was wrong
At about two years old, Jason still wasn’t walking. “I decided one morning to stand him up and hold his hands tight to play a game. He fell many times, and after many tries, he finally got the hang of it. He was taking a few steps, and it was a breakthrough in our house. Finally, we were making progress.” -Christine Winslow
People would compliment his huge calves. Christine recalls that a lady had said, “Look at those beautiful big calves.” At that moment she did not know that it was one of the traits of Duchenne muscular dystrophy. Christine always felt that her entourage was wondering what was happening.
“You end up isolating yourself with your child because it’s too exhausting and hurtful to have to explain it all. The worst was when parents would interfere and say, “relax or stop panicking let him go off”: as a mom you know something’s wrong and you need to be cautious.”-Christine Winslow
It’s tough to see your child undergo as many tests and evaluations. Parents spend a lot of time at the various intervention centers with their children. Occupational therapy, speech therapy, physiotherapy, the list is long. Jason had several symptoms of Duchenne muscular dystrophy. If only he had been diagnosed quickly, they could have started the treatments sooner. “Instead, we were forcing him to climb stairs.”-Christine Winslow
The Doctor scribbled the word “Duchenne” on a Post-it
July 2013, Jason was six years old.
“He had the flu, and off to the Doctor we went, not expecting the visit to end as it did. The Doctor prescribed medication, and we were walking out when he called us back. The Doctor noticed Jason’s waddle and requested Jason to squat. I explained that he couldn’t. He scribbled the word “Duchenne” on a Post-it and told me to go home and read about it. Recommended we go to South Africa for testing.”-Christine Winslow
She called her husband at work and told him the news. He immediately started to google. Later that day, he arrived home and told his wife what he had read.
“It felt like darkest coldest day ever. It felt like everything around me was crumbling. Shock fear and confusion, I don’t even think I remember what he said after.How on earth could that be? A fatal muscle wasting disease? Jason had the biggest calves so how could it be.”-Christine Winslow
This family did not know much about DMD. After their visit to South Africa, she sat on the plane thinking that the result would be negative. It could not be positive. It could not be the DMD. “Our perfect little family couldn’t possibly go through something as devastating as this.”-Christine Winslow
After months of waiting for genetic test results, sleepless nights, the result has arrived. It was positive. Jason had Duchenne muscular dystrophy. This family learned that their only child had DMD. The illness entered their home and told them that Jason would stop walking at age 12 and would have a life expectancy in his twenties.
Duchenne changes a person
“Duchenne changes a person. It changes your relationships with friends and family.There are friends and family that will support you on your journey, and there are others that will drift away. Do they not know how to act when they see Jason in his chair? You don’t receive an invitation because it’s too much for them to handle?”-Christine Winslow
Christine smiles and tries to stay positive. She remains strong for her family. But she is also a mother who raises a son with DMD as best she can. This mother gives us her feelings in all honesty. “I will say that it is not always the easiest thing to watch another child score a goal or climb a jungle gym. The bitterness and anger creep in”-Christine Winslow. Why is his son confined to a wheelchair? The feeling of injustice is big. At the same time, there is another voice that says she had to make this trip.
“I’m still not completely sure why but I do know that it’s made me a better person. Not to take things for granted.”-Christine Winslow
Jason has not been walking since March 2017. Endless appointments with doctors and specialists are always very demanding and emotional. Not to mention the many sessions in therapy.
Christine continues to educate the public about DMD. She continues to hope that there will be a treatment one day.
“I will travel with my son, go on adventures, make memories and make each day count.”-Christine Winslow
Special thanks to the Winslow family
