Mum, is what I've got serious?

The date 12 March 2007 will forever be ingrained in Janneke Hendriks’ memory. ‘That’s the day we heard Jayden has Duchenne Muscular Dystrophy (DMD). My life has been tough from that moment forward.’ Janneke Hendriks brushes away a tear. ‘You can’t imagine all the things that go through your mind when you hear something like that.’ Ryan and his little brother Jayden have just taken a shower and are in their pyjamas watching television on the couch. The two little guys look a lot alike. Jayden does, however, demand a lot of attention. ‘He senses that he’s at the center of things,’ says Janneke. ‘And that’s something we’ve got to work on. Everybody goes out of their way to pamper him. And as a single mother with a busy job it’s an incredibly daunting task to keep everything on track.’ Janneke is determined to make one dream come true. ‘I want to have a house built that will have everything required for Jayden when he reaches the point that he needs extra help.’ You can see the determination in her eyes. ‘But sometimes I feel just like a robot.’

"Jayden was falling a lot. I thought his shoes might be too small or something like that. But he kept having falls and he had a really peculiar way of walking up steps. He would walk over to a wall and then pull himself up the steps."

Janneke has just moved into a lovely and comfortable home in Doetinchem, the Netherlands with her two sons. Everything is in perfect order. Ryan is now eight and his brother Jayden is six. Janneke found out that Jayden had the muscle disease when he was three and a half years old. ‘Jayden was falling a lot. I thought his shoes might be too small or something like that. But he kept having falls and he had a really peculiar way of walking up steps. He would walk over to a wall and then pull himself up the steps. His motor skills were not very good. He absolutely had two left feet.’

Jayden was three and a half at the time. The boyfriend of a close girlfriend gave Cesar therapy aimed at improving the locomotor apparatus. Jayden’s father, who is no longer in a relationship with Janneke, had his doubts about the effectiveness of this therapy. ‘He said nobody in the family was very limber. But I went ahead and sent Jayden to the therapy anyway. But after six months, the therapist said Jayden actually hadn’t made any progress. His little neck still looked as stiff as ever. The therapist already had something in mind. And in retrospect, if I’d surfed the internet for information, I could have seen it as well. Based on all the information I later read on the internet, I would have been able to make the diagnosis straightaway. You didn’t really need to be a doctor to figure it out.’

"When we got back home, we still weren’t overly worried. There are all kinds of muscle diseases, we thought. It could be anything.

We also decided not to surf the web for information. We didn’t want to drive ourselves crazy."

‘The first thing we had to do was have his blood tested. We weren’t really worried at that time. My ex-husband Frits had to work and couldn’t go with us to the hospital. I could handle it on my own.... And then Dr Vermeulen in Doetinchem told me that the blood test showed that Jayden had a kind of muscle disease. I didn’t fully understand the implications at the time. Frits obviously rushed to the hospital right away. When we got back home, we still weren’t overly worried. There are all kinds of muscle diseases, we thought. It could be anything. We also decided not to surf the web for information. We didn’t want to drive ourselves crazy.’

‘Four weeks later we spoke with the Radboud Hospital in Nijmegen that was going to carry out the subsequent tests. They wanted to see Jayden at the appointment when we would hear the test results. ‘And then,’... Janneke is once again overcome by emotions..., ‘they told me it was Duchenne Muscular Dystrophy. Frits and I looked at each other and then at the doctor in utter disbelief. After a brief explanation, the doctor said, “Why don’t you just go and have a cup of coffee; we’ve got to move on to the next patient.” Have a cup of coffee? No way. I wanted to go home. I wanted to go to Frits’ parents. I’d already lost both of my parents at that time. Everything was a huge mess from that moment on. We were already going through a tough time in our relationship, but the diagnosis really sped up the process of our getting a divorce.’

"I’ve had a really hard time.
I actually couldn’t do it on my own. There was so much to handle that I couldn’t pinpoint the cause of all the despair."

‘I now live alone with the boys and work for companies including Atag. I’ve had a really hard time. I actually couldn’t do it on my own. There was so much to handle that I couldn’t pinpoint the cause of all the despair. But then you suddenly realise that bad things happen to everyone. And it’s good that the diagnosis was made early on. Jayden now has to wear splints at night and he has to take prednisone. I also give him green tea extract, which is a new discovery.’

"I still haven’t been able to feel the same way again."

‘Once you’ve taken all of this in, you realise that one second can totally change your life. Everything has stabilised somewhat now and there are days that everything goes fine. But then all of a sudden I’m hit with a bad day.’ Janneke admits that she actually thinks about it every second of every day. ‘It has truthfully always been a black cloud hanging over me and I have never felt the same after the day of the diagnosis. I still haven’t been able to feel the same way again.’

‘I did everything on my own for the first eighteen months. My ex-husband found the whole thing very confrontational. It must be said, however, that he is crazy about the boys and does all kinds of things with them. But this is an extremely painful subject for him. And we have handled it in completely different ways since the outset. We unfortunately have very different views on the best way to raise Jayden. I want to treat him like a normal kid who has a future. My ex-husband actually only wants to do specific things with him now that Jayden will eventually no longer be able to do. I want him to take speech therapy. And to do walking exercises. But it’s as if my ex-husband is afraid to think about the future. And that makes it difficult for both of us to take a unified approach to raising Jayden.’

Two different worlds

‘As a result, Jayden lives in two completely different worlds. His behaviour has changed incredibly because he has noticed that everybody around him started looking at him differently. His grandmother lets him have or do pretty much anything he wants. Her intentions are nothing but good. It is, however, important to try to reach a good balance. You don’t have to do everything for a boy like Jayden. He always uses all kinds of excuses and tricks to try to get you to help him tie his shoes. But if you just walk away, he can do it himself. We are now also receiving counselling from the Radboud Hospital in Nijmegen in order to try to reach a single line of approach.’

Frustrating

"He keeps asking why the other kids at school can run faster than he can."

‘Jayden is also fairly frustrated himself. He keeps asking why the other kids at school can run faster than he can. And if things don’t go his way, then he’ll sit on the ground and scream his lungs out. That’s his way of expressing himself. He often says, “My muscles are tired.” His brother Ryan said to him the other day, “When you end up in a wheelchair, we’re going to turn this room into a disco room.” But Jayden did not get the bit about the wheelchair.

It’s also very difficult for Ryan. I devote a lot of time to talking with Ryan to try and help him to understand everything. Jayden recently asked while we were driving to the hospital whether there are other kids who have DMD. I said, “Yes, of course there are.” And then he asked, “Is what I’ve got serious?” I said that things wouldn’t be easy for him.’ Janneke wants to be honest with him, but doesn’t want him to be burdened down with the disease at such a young age. ‘He’ll naturally come to realise the implications of the disease as he gets older.’

Jayden currently has physiotherapy once every two weeks and speech therapy every week with a view to his future. Janneke also wants to have a house built in the center of Doetinchem. ‘There’s a chance it might happen, so I’m not giving up yet. It would be absolutely perfect for Jayden. We could reach the high street, the cinema and the hospital within minutes from the town center. And his dad lives close by and there’s a pharmacy just a stone’s throw away. He could do everything independently and I would be able to let him do his own thing. I don’t want to raise him in an overly protective environment. I want to fight for that house. And I’m doing everything in my power to make it happen. The fact that the goal is extremely clear and worthwhile gives me a lot of energy.’

"I don’t want to raise him in an overly protective environment."

Fundraising

Janneke has participated in numerous fundraising activities and together with others has raised a total of € 20,000 for the Duchenne Parent Project. ‘I got active in fundraising as soon as I heard Jayden’s diagnosis. I have sometimes been accused of spending more time on fundraising than on Jayden, but that’s obviously not true. I guess I participate in fundraising because it’s all I can do. I’m willing to put a lot of energy into it. Friends of mine even went as far as to organise a benefit concert for me. You name it, we’ve done it. We sold bracelets, gathered old mobile phones and took up a collection. And we even organised a spinning marathon at a health club.’

‘I fortunately am in a relationship now. My boyfriend is going with me to the Dutch National DMD Day in Nijmegen. And that’s a tremendous support.’