7 Years Old | Antwerp, Belgium
In October 2018, when Viktor was 4 years old, we finally found out what was going on. We went to different doctors and hospitals before receiving the diagnosis. The day we finally got diagnosis was not what we hope for or what we expected. We were devastated on what the outcome was and still are to this day.
Viktor started as a healthy baby and became a happy toddler that could crawl, talk, sit up on his own, eat by himself and walked with his key walker. He could be independent and liked to play with toys like any other child.
Step by step all these abilities were taken away from him and he is now a child who needs assistance with all basic things like eating, drinking, transportations…
Playing with toys is very difficult as the fine motor skills are getting worse. Communication is also slowing down, and he is difficult to understand for an outsider. Nevertheless, Viktor is still a happy child who likes attention from his family and friends and likes children in his neighborhood. He laughs out loud with jokes and likes to hear music.
Snuggling with his family, singing, sitting in his chair and play with his coins, going out for a walk, swimming, horseback riding and just be around family and friends. Until last year, he played a lot with his Duplo blocks, putting them in and out of each other, repeatedly. Now he lost that ability as well.
Mashed potatoes with a lot of ketchup and pudding as dessert. When he was still able to eat hard food, he liked to eat chips and cookies the most.
Viktor always has Bumba on the television in the background. He doesn’t see it anymore but knows it by heart and can laugh with what is going on.
Bumba – Dag Juf
Keep smiling and enjoy the little things.
When we received Viktor’s diagnosis your whole world is falling apart. You start searching for solutions, you want to find a cure, you want to stop this disease and that keeps you moving forward. With the search, we found a Facebook group and the foundation where there are other parents with children with INAD, which you can contact and who will understand what you are feeling.
Each day stays a struggle as Viktor can’t speak for himself. You must defend him in any way you can and have to think about the next steps and how you can stop them as long as possible. You must be his advocate to see that he gets everything that he needs and also what he doesn’t want.
You always must be attentive to what is going on and be one step ahead, or try to be. You must ‘read’ Viktor and see that he is comfortable.
Next to that, it makes it hard as a family as Viktor has a sister who is also a child and want to do different things during her childhood. But doing ‘normal’ things, is not always easy or even possible. The older she gets, the better she understands.
All that together makes INAD such a challenge and an emotional roller-coaster. But Viktor is a lovely, charming and happy child. From the moment you take him out of bed until the moment he is in bed, he is smiling and enjoying his day. He is an amazing kid which we don’t want to miss, but we know some day, we will have to miss him, which is a very hard thought.
Viktor has a sister Elise, who is three years older. She loves him very much. They cannot really play with each other but find ways to laugh a lot together. Saying things which are completely incorrect, makes Viktor laugh. Running and racing around in his wheelchair he really loves.
It’s very lovely to see the bond they have with each other. When Viktor gets up in the morning, the first thing he asks is: “Where is Elise?”