Maria: ‘I used to be shy, but having to
fight for Marlie made me assertive.’
Maria and Paul have two sons and one daughter. Marlie suffers from the Vici Variant Syndrome and has multiple disabilities. The life expectancy of children with this syndrome is low.
After receiving the devastating news that Marlie suffers from the Vici Variant Syndrome everything revolves around the care she needs. Quickly medical aids enter the house – an adjusted buggy, bath, children’s chair, car seat and bike seat. Maria tells her story because she wants to let the world know what life with a disabled child is like. Show the impact it has on her family and herself. ‘I used to be shy, but now I’m very assertive. I have the urge to fight for Marlie. She can’t do that herself.’
The daily care Marlie needs is intensive.
‘She has epilepsy and that can surface at any time during the day. I have to be aware of that constantly. When she coughs she can always get something in her throat, which would block her breathing. And she doesn’t eat well. That’s a symptom of the syndrome. Two years I spend feeding her, all day long. She grew a little, that’s why I kept going. I didn’t want her get a feeding tube. But eventually she got one anyway. Another machine to get used to. Often I ask my mother and sister to babysit. It’s difficult to find a babysitter. Not everybody want to learn how to deal with a feeding tube. And they don’t know what to do when Marlie cries, vomits or coughs.’
Fortunately Maria meets up with people who are going through the same once every few weeks.
‘The last few years we knew about ten children with this syndrome on Urk.’ She keeps quiet for a while. ‘In our family too. Nine months after Marlie’s birth, my sister got a boy with the same syndrome. Unfortunately he only lived twenty months. He passed away last year. Some of the other children with the Vici Variant Syndrome have passed away too. The life expectancy is somewhere between zero to twenty. Last year a twenty year old girl passed away. She used to be the oldest child with this syndrome.’
‘Since July 2013 the syndrome is called the Vici Variant Syndrome.
Before that it didn’t have a name.’ Presumably this genetic disorder developed during the eighteenth century with a couple from Urk. Nothing is known about the children who had the syndrome in the past. Most likely they passed away soon. Without the modern medical care they had no chance of surviving with their weakened immune system. Most children with this syndrome live on Urk or have family ties with Urk. But now there’s a child with the syndrome found without family ties with Urk. That makes the scientific research even more complicated.
‘It’s very nice to talk with people who go through the same,’ tells Maria.
‘We exchange experiences and advice. Actually I feel let down by the health care system. As parents we have to find out everything ourselves. Nobody tell you what to do. Our whole life revolves around Marlie. For her we even moved to an adjusted house, with a bedroom and bathroom on the first floor. Renovating our former house was too expensive for the counsel.’
Difficult. ‘We had to move away from the area we knew so well.
And the boys go to a different school now. It’s far too dangerous to cycle to their previous school, with all the building traffic here. And bringing them ourselves is not an option. With heavy rains and stormy weather Marlie is not allowed to go outside. She gets very ill immediately. It’s difficult I have two more children. It’s difficult I can’t give them everything I want. It took a long time before I allowed them to join a football team. How was I going to do that? I prefer to take care of everything myself. I don’t want to be dependent, but now I ask if somebody else can pick them up when the weather is bad, sometimes.’
Spontaneous outings are often difficult.
‘When the boys want to go swimming in the Summer, I often have to say no. Then I feel guilty. Thankfully they don’t complain. They accept the situation. But of course I don’t know what they think deep down inside. Maybe they feel pushed aside because Marlie always comes first now. But she can’t take care of herself. Some time ago I started to hire a babysitter for one afternoon a week, using our personal care budget. That gives me the opportunity to go out with the other children.’
Maria quit her job.
‘It became impossible. Often Marlie was ill and then I had to arrange care. Or I was up with her myself the whole night. Sometimes I had just clothed her, and then she threw up again. Then I had to start all over again. When I had to be at my work at nine o’clock, the day started with a lot of stress. At a certain point in time I was fed up with it. All that hurrying. In the fish industry you work long hours. Quitting has made life easier for our family.’
‘I had a very hard time.
I have less social contact now and I’m caring for Marlie all day. Working in the fish industry was fun for me. Two days away from home. Don’t worry for a while. Meet people. At medical appointments, people always ask what we do. First I considered that to be normal. Now I find it difficult. Not working feels like failing, as if I’m lazy. While I’m busy taking care of Marlie all day long.’
Dutch text: Alice ten Napel. Pictures: Maria Feenstra.
Translation into English: Daniëlle van Westen.
Next time in part 4: It’s not only the care-giving that makes it difficult. Maria encounters much bureaucracy when she requests medical aids.