Kevin's Big Dream: A Family Trip to the West Coast

Dear friends, Kevin's family is just incredible. Ever since they learned he has Duchenne muscular dystrophy, they've done everything they can so he can live as normal a life as possible, right in the middle of society.

Last year brought several health challenges, and since then his wish has only gotten louder: to travel with his family to the U.S. West Coast. The young man's life motto is: “It's not about how long you live, but what you make of your life.”

Unfortunately, the trip comes with considerable costs, for example bringing along a trained nurse and arranging specialized transportation. That's why a group of friends is raising donations right now for the family, to make this miracle possible. We got to interview Kevin and his mom, Nadine, about it.

Dear Nadine, your son Kevin lives with an incurable condition, Duchenne muscular dystrophy. What exactly does that mean for him, but also for you as a family?

Medically speaking, it means his muscles are being converted into connective tissue. What does it mean for him? Good question. He's in a wheelchair, and other than his fingers, his eyes, and his mouth 🙂 he can't really move much anymore. But he doesn't let that take away his joy in life.

For us as a family, the disease means we're reminded every single day to live NOW! Especially this past year, we've had to learn how fragile life is. Muscular dystrophy also takes away our spontaneity. Being a parent who provides care means you're always on call. Now we have an intensive home nursing service, which clearly takes a load off us, at least on the medical side.

You got the diagnosis when Kevin was 5. Were the first few years still unremarkable and fine?

Yes, for the first few years everything seemed fine. He learned to walk, ride a bike, and so on, just like any other boy his age. At some point his legs got weaker and certain movements started to stand out. After a number of tests there was a suspicion, and after genetic testing came the diagnosis.

Was the diagnosis more of a relief or a shock?

The diagnosis was a huge shock! The neurologist asked me not to google it right away. But what does a mom do?? The first thing I read was that life expectancy is 16. Luckily, that has changed a bit. And Kevin is now almost 22, so everything that comes now, we enjoy as a bonus level.

How did you manage to say right away: Nope, we're doing everything we can to give Kevin a normal, fulfilling, self-determined life, not on the edge of society but right in the middle of it?

It was very important to us that he not be put in a box and that the diagnosis affect his life as little as possible. We were very lucky that he already had wonderful friends in preschool who, with help from their families, simply included him and treated him like any other kid.

Two of those friendships have lasted to this day, and those guys are worth their weight in gold. They and some other friends who've come along since make it possible for Kevin to be part of everything. At concerts, for example, they take him in his wheelchair right up to the front by the stage and form a half circle around him so nothing can happen to him.

Your friends describe Kevin as “unbelievably full of life, positive, and funny.” How would you describe him?

As our source of strength! His love of life and his sense of humor give us drive and energy again and again.

Last year then brought extreme challenges for Kevin and all of you. His dad even had to resuscitate him…

Yes, that was an experience none of us needs again anytime soon. Seeing your child like that and not knowing whether he'll survive is something you wouldn't wish on your worst enemy. He was put into an induced coma and needed a tracheotomy to be put on a ventilator.

What did he have to relearn first in rehab?

After seven weeks in the ICU, he had to relearn how to breathe on his own, swallow, and even speak.

How is he doing today? He's even back at work, right?

Yes, after exactly 100 days he came home. Then he did a very gentle, long phase of easing back into work, and today he's actually back to his original 30 hours a week. Honestly, nobody really expected that, but his job in e-commerce gives him an incredible amount of strength, and he has a lot of fun doing it.

Now Kevin has one huge wish close to his heart: a trip with his family to the U.S. West Coast. How long has he been dreaming of this, and why this destination in particular?

Kevin is a huge car fan, and he's been watching lots of American YouTube channels for a long time, the ones that keep featuring car museums, racetracks, and tuners on the West Coast. So he and my husband have already put together a wish list of places. Among other things, they want to go to the Petersen Automotive Museum in L.A. and to the Laguna Seca racetrack near Monterey.

What does it mean to you to already be receiving so much support?

It's just overwhelming what's happening right now. About two years ago we'd already started planning a trip to the U.S., but after the first calculations we put the whole thing on ice, realizing we'd have to save up a bit first.

After what happened last year, we're simply running out of time to save. So our friends came up with the idea for the fundraising campaign and also brought Kevin's boss and a local charity group, Fortuna hilft ("Fortuna Helps"), on board. And what can I say… except THANK YOU!