Maarten is world-famous, especially in and around Kaggevinne

Jo Rooseleers and his partner, Ilse Vanhoolandt, live in the rustic village of Kaggevinne near Diest in the province of Flemish Brabant in Belgium. Everyone knows the family and their children: fourteen-year-old Lukas, twelve-year-old Hannah and Maarten, who just turned ten. Maarten is especially well known around town. All of the children at school are his personal bodyguard. This is because Maarten has Duchenne Muscular Dystrophy (DMD). Therefore, the motto is: ‘Be careful with Maarten’. Maarten and grandad, who has picked him up from school for lunch, enter the room. ‘He has his hands full taking care of him,’ says Jo, ‘but he thoroughly enjoys it.’ Ilse continues, ‘We are a close-knit family. Family is everything to us, and to Maarten and his brother and sister.’ This is the down-to-earth story of a cheerful and energetic family coping with the sudden reality of DMD.

Maarten’s condition was already diagnosed when he was two years and four months old. ‘That was actually at a very young age,’ says Ilse as her mind wanders back to those days. ‘When he was 17 months, we started noticing that Maarten was different from other children. Being a nurse myself, I spotted it early on. Maarten didn’t crawl on all fours, but would slide on his backside across the floor. He always had to pull himself up, which required a lot of energy.’ ‘It wasn’t until 22 months that he started to walk,’ Jo explains. ‘That’s quite exceptional. Our other two children were also late walking, but stood bolt upright. Not Maarten. He was also falling a lot. Once, before he could walk, he had a bad fall down the stairs, which caused him to sprain his ankle. He visited a neurologist at Pellenberg Hospital from the age of 17 months. Maarten was scanned, but nothing unusual was found in his brain pattern. There also seemed to be nothing wrong with his hips and muscles. He did always have very muscular calves, even as a baby. But no one around us was able to link it to DMD.’

"It wasn’t until 22 months that he started to walk. Our other 2 children were also late walking, but stood bolt upright. Not Maarten. He was also falling a lot."

Not even the 70-year-old paediatrician Ilse saw as a child had ever treated a child with DMD. ‘This goes to show how rare the disease is. The reflex test with the hammer did show a lesser response. So we were advised to take Bobath therapy to stimulate and accelerate Maarten’s psychomotor development. This type of therapy focuses on children with brain damage. We went there three times a week.’

Jo still finds it odd that some hospitals do and others don’t carry out a heel-prick blood test to check the level of certain substances that may indicate diseases like DMD. ‘This should be a standard procedure in every hospital, shouldn’t it?’ says Jo.

Maarten went to preschool when he was two-and-a-half years old. ‘Of course we already knew that other children could walk faster. Even so, he was always tired. We were accustomed to the way he was. And, at the same time, we weren’t at all. He was a lot weaker then. He is on a corticosteroid now. That keeps him in good shape.’

"Of course we already knew that other children could walk faster. Even so, he was always tired."

‘At a certain point, things got worse,’ Ilse continues, ‘so I called the University Hospital Gasthuisberg in Leuven. After explaining our situation, we were referred to Dr Goemans. Maarten was taken into another room because they instantly spotted the tell-tale signs: his physical build, the curvature of his spine and, of course, his calves.’ Samples were taken from Ilse’s and Maarten’s blood, and they were asked to come back in five days for the result. The hospital staff was very friendly. ‘Maybe a bit too friendly, come to think of it,’ Ilse remembers. ‘Then we were told the test revealed a high level of creatine in Maarten’s blood. Dr Goemans said she suspected DMD. “I actually have some bad news,” is what she said. At that moment, I didn’t fully understand the implications. DMD did ring a bell with me though, while Jo had never heard of it.’

Since that time, Dr Goemans has virtually become part of the family. ‘She’s the best,’ Ilse says affectionately. A DNA test was done at a later stage to confirm the diagnosis, but Ilse already knew before the results came through. ‘My maternal instincts told me it had to be DMD.’ The DNA test showed that the disease resulted from a spontaneous mutation instead of being inherited genetically.

"Dr Goemans has virtually become part of the family. She’s the best"

Seven years later

Seven years after the diagnosis, Maarten is doing well. But when he comes home from school with his grandad, he has to lie on the sofa to rest. ‘Yes, he does tire more easily now. But we try to keep him mobile.’ Maarten has physiotherapy three times a week, where he does a lot of abdominal exercises. And recently, he has started taking swimming lessons. ‘He’s a regular water rat,’ says Ilse. ‘We’re even having a heated pool installed in our garden so that he can exercise as much and as often as he likes. And we have the space for it. We also have a trampoline, which Maarten loves. He dreams of being a professional football player.’

"Yes, he does tire more easily now. But we try to keep him mobile."

Ilse continues, ‘Maarten is a cheerful little boy who goes to school with a big smile on his face. He loves to be among friends. Another thing he really enjoys and finds exciting are city trips. He especially loves the hotel rooms.’

During our conversation, Maarten is still lying on the sofa. He is small for his age and has a roguish face. ‘We think he’s much more aware of his condition than we realise. Fortunately, children of his age don’t yet have a sense of time. He asked us once if he was handicapped after a friend had said that he could wind up in a wheelchair. I then told him that he had a muscular disorder. We have already got him a very fancy wheelchair. But he hasn’t used it very often,’ says Ilse with a great big grin on her face.

‘He isn’t really interested in existential questions,’ Jo adds. ‘But sometimes, he does ask us something that makes us hold our breath. He saw a commercial for a wheelchair lift once and said that he wanted one of those when he would be in a wheelchair… And he wanted more than anything to be a policeman. But that will be impossible in a wheelchair.’ ‘I dreaded what to tell him if he started asking questions about his condition,’ says Ilse. ‘Not just Maarten, Lukas and Hannah also want to know what Maarten’s prospects are. We saw a television programme on DMD called ‘Race Against Time’. Lukas, who was watching too, asked: “Does this mean he will die?”’ Ilse thinks that Maarten has a sneaking suspicion of where this is headed. ‘But one thing at a time. Time brings wisdom.’ He now talks about his disease with his brother and sister. Plus, everybody in our village knows Maarten. At school, they would do anything for him. ‘All of the children in his class are his personal bodyguards.’

"At school, they would do anything for him. All of the children in his class are his personal bodyguards."

The family home is big enough for the time being. A few years ago, an extension was done and wider doors were put in. Another add-on may be necessary, but Jo wants to postpone that for as long as he can. ‘There’s always hope!’ Jo and Ilse say, referring to the ongoing research & development efforts.

DMD Parent Project extended to Belgium?

For the past five years, Jo and Ilse have travelled to the Netherlands to attend the Dutch National DMD Day. Jo also takes part in the annual 700 kilometre-long Duchenne Heroes mountain bike tour with his team ‘Bikers for Maarten’. At the time of the interview, the race was scheduled to take place in a few weeks. Last year, Jo even collected as much as 78,000 euros, while he thought that convincing three or four people to pay 2,500 euros each to take part would be stretching it. This year he has signed up together with twenty cyclists and five support staff. ‘We are virtually the only Belgians involved in this.’ Despite the economic crisis, sponsors have come through in a big way to fund the event. ‘Most of last years’ cyclists immediately decided to participate again in 2009. An event like this is very energising and keeps your spirits up.’

Jo and Ilse would welcome a Belgian Duchenne Parent Project. ‘If we could get the support of five or six parents, it would be possible. But we aren’t able to do it on our own.’