Dear friends, Kevin’s family is simply amazing. Since learning that he has Duchenne muscular dystrophy, they have done everything they can to ensure that he can lead as normal a life as possible within society.
Unfortunately, there have been some health challenges over the past year, and since then his wish has become even stronger: to travel to the American West Coast with his family. The young man’s motto in life is: „It’s not how long you live, but what you do with your life.“
Unfortunately, the trip involves considerable costs, for example, due to the need to take a nurse and special transport with them. That’s why the circle of friends is currently collecting donations for the family to make this miracle possible. We had the opportunity to interview Kevin and his mum Nadine about this.
Dear Nadine, your son Kevin lives with the incurable disease Duchenne muscular dystrophy. What exactly does that mean – for him, but also for you as a family?
Medically speaking, it means that his muscles are being converted into connective tissue. What does it mean for him? Good question. He is in a wheelchair and can’t really move much except his fingers, eyes and mouth 🙂, but that doesn’t take away his zest for life.
For us as a family, the disease means that we are reminded every day to live in the NOW! Especially in the last year, we have had to learn how fragile life is. Unfortunately, muscular dystrophy also robs us of our spontaneity. Being caring parents means always being there, at all times. Now we have the intensive care service, which clearly takes some of the burden off us – at least as far as the medical side is concerned.
You received the diagnosis when Kevin was 5 – was everything normal and okay in the early years?
Yes, everything seemed fine in the early years. He learned to walk, ride a bike, etc. like any other boy his age. At some point, his legs became weaker and certain movements became noticeable. After a few tests, the suspicion arose and, following a genetic test, the diagnosis was made.
Was the diagnosis more of a relief or a shock?
The diagnosis came as a huge shock! The neurologist asked me not to google it straight away. But what does a mother do? The first thing I read was that life expectancy is 16. Fortunately, that has changed somewhat. Kevin is now almost 22, and we enjoy everything that comes now as a bonus.
How did you manage to say straight away: No, we’re going to do everything we can to give Kevin a normal, fulfilling and self-determined life – not on the margins of society, but right at the centre?
It was very important to us that he wasn’t pigeonholed and that his life was affected as little as possible by his diagnosis. We were very lucky that he already had great friends in nursery school who, with the help of their families, simply integrated him and treated him „completely normally“.
Two of these friendships continue to this day, and the boys are simply priceless. They and other friends who have joined them make it possible for Kevin to just be there. At concerts, for example, they take him in his wheelchair to the front of the stage and shield him in a semicircle so that nothing can happen to him.
Your friends describe Kevin as „incredibly life-affirming, positive and humorous“. How would you describe him?
As our source of strength! His life-affirming and funny nature constantly gives us drive and energy.
The past year presented Kevin and you with extreme challenges; his dad even had to resuscitate him…
Yes, that was an experience that none of us want to go through again any time soon. Seeing your child like that and not knowing whether they will survive is something you wouldn’t wish on your worst enemy. He was put into an induced coma and needed a tracheotomy to help him breathe.
What did he have to relearn in rehab?
After seven weeks in intensive care, he had to relearn how to breathe, swallow and speak independently in rehab.
How is he doing today? He’s even back at work, right?
Yes, after exactly 100 days, he came home, went through a very gentle and long reintegration process, and is now back to his original 30 hours a week. To be honest, no one really expected that, but his work as an e-commerce merchant gives him an incredible amount of strength and he enjoys it very much.
Now Kevin has a huge dream: a trip with his family to the west coast of the USA. How long has he been dreaming about this and why this particular destination?
Kevin is a huge car fan and has been watching lots of American YouTube channels for a long time, which often feature car museums, race tracks and tuners on the west coast. That’s why he and my husband have already put together a wish list of locations. Among other things, they want to visit the Petersen Museum in L.A. and the Laguna Seca race track near Monterey.
What does it mean to you to receive so much support already?
What is happening here right now is simply overwhelming. We had already started planning a trip to the USA about two years ago, but then put the whole thing on hold after the initial calculations, realising that we would have to save up a little more first.
After last year’s experiences, we are now simply running out of time to save. So our friends came up with the idea of a fundraising campaign and got Kevin’s boss and the Fortuna hilft association on board. And what can I say… except THANK YOU!
