Noël van Ees is 13 years old and has the ADOA-plus syndrome (the website says ADOAC plus, but this is not correct) and was recently interviewed by the Eye Association. Noël talks about his daily life. Like most boys at that age, Noël loves gaming and he is now in seventh grade. Noël is a boy like any other, you would think. But in the meantime he has to deal with visual impairment, a motor disability, autism and anxiety.
We think it's super cool that Noël dares to talk so openly about his condition! He was interviewed by Marijke Osinga of the Eye Association.
On March 6, 2021 I will visit Noël van Ees in Rijnsburg to interview him. Noël tells his story at the dining table. His parents are also in the living room and appear very involved. Noël says that he has just started school again on location for one and a half days a week. Normally Noël goes to school by public transport, but now his parents take him because he is afraid of becoming infected with COVID-19.
“When I still went to school by bus, I often stayed on the bus because it seemed safest to me. I always had a suitcase with me so that I didn't have to carry too heavy a load on my shoulders. The bus drivers indicated where I could sit because they saw from my identification stick that I cannot see very well. Still, I remained afraid that I would not keep enough distance.”
Confronting
Noël went to a regular primary school, but after the summer holidays he went to the first class of the VMBO at the Thermiek. De Thermiek is a school where special education is provided.
“I am one of the least disabled children in the class here. I like that, but it is also confrontational. Across from me sits a girl in a wheelchair. That reminds me of my own possible future.
There are only twelve students in my class. This makes it much quieter than at my previous school. In recent months I have been taking lessons virtually. This way I have much less distraction. That's why I like it even more.
However, it is sometimes difficult when taking tests. At school, pictures are provided to me in enlarged form when I take a test. Now I have to zoom in very far. The problem is that the image becomes increasingly blurry and it remains difficult to see what is on it. Fortunately, I have a good outpatient supervisor from Bartiméus who, together with me and the teachers, looks at how we can solve something like this," Noël explains his experiences.
Pure white face
“With those virtual classes, you will probably have a lot of trouble getting out of bed in the morning. Your mother must often have to call you before you get up?”
“No, I'm not a late riser. And I call my mother when I wake up,” Noël laughs. “I'm very afraid to get up. That is why Kato came here.”
Kato turns out to be a service dog, a friendly, not too large Labrador. When I arrived, Noël sent him to his seat, but now he has the opportunity to get to know me. He immediately comes to me to be petted.
“Tell me more about your fear,” I encourage Noël. “I am very afraid of the dark. It was so bad for a while that I wouldn't dare go to sleep if a construction lamp didn't illuminate my entire room. With the arrival of Kato things have become much better. A night light is now sufficient. I also sometimes see things that, when I think about it, are not possible at all. But then fear has already taken hold of me. And that feeling only goes away after days. For example, above a black coat hanging on the coat rack, I can see a pure white face. I know it's not possible, but still... Kato is there to calm me down in such a case.”
Gene therapy
Noël has ADOA+. This means that he has a visual and motor disability. ADOAC+ is a progressive, hereditary condition.
“I see about thirty percent. Over the years my vision has become increasingly blurred. In addition, I miss large parts of my field of vision. Normally I don't notice it much, but it does bother me when I'm tired. I can only walk a kilometer at most, and then I have to lie on the couch all afternoon to rest. They are developing a gene therapy for ADOA+. This appears to be more difficult for ADOA+. I would give anything if they found a medicine to cure me.”
'I see nothing'
In addition to this condition, Noël also has a form of autism. “When I fold a piece of paper in half, the edges must be exactly on top of each other. I am also very careful with my hair, my pants and my sweater. Otherwise I really don't feel happy,” he explains.
“The doctors have no explanation for my fears. My limited eyesight may have something to do with it.”
By the way, my ophthalmologist's name is Notting. Her initials are IC. An appropriate name, don't you think? If you pronounce her name in English, you say 'I see nothing!'”. During the course of the conversation, Noël seems to become more and more cheerful.
Behind glass
“I have two friends, Lucas and Tjitse. It is easier for Tjitse to understand that I get tired quickly than for Lucas,” says Noël. His mother adds: “They are very different children. Noël's condition is not always understandable for adults either. Noël sometimes plays with Kato in church. Then people come up to me and tell me that he is doing a lot better. I find those kinds of comments very difficult. I know that in the afternoon he is exhausted after such a romp and has to rest on the couch.”
“What are your hobbies?” I ask. “Gaming,” Noël answers immediately. “Fortnite, Ark, Minecraft and Calf of Duty. This last game is for 18+.”
“No, I don't have anxiety during these games,” he responds cheerfully to my question. He explains: “It's behind glass and I know it's not real.”
Rich or healthy
Noël recently had a great wish day. He was picked up from home in a Ferrari and was able to experience what it is like to speed along the Dutch highways at 173 kilometers per hour. Due to the lockdown, he, his parents and Tjitse were the only guests in the Dolfinarium. 'In the afternoon at the Game Museum it turned out to be a little busier and Noël discovered to his great surprise that Dutchtuber was also playing in the museum. “It came especially for me.”
Given the foregoing, it seems logical that Noël would like to do something in the IT field later. However, he also has a practical reason for it. Computers allow me to continue working even if my vision deteriorates even further. I would like to work in a hospital or at KPN. My father worked at KPN.” With this last comment, Noël looks proudly at his father.
He further says about his future: “I would prefer to become rich. No, I would rather be healthy. I would rather be dirt poor and healthy than rich. But hey, if I'm rich, I'd have enough money for drugs that could make me healthy, if they ever come. And if I have a choice, I would rather see better again than walk better.”
About Marijke Osinga
Marijke Osinga is a lawyer. She also writes stories and conducts interviews. She does the latter because she would like to do something about the image of people with disabilities. She herself is visually impaired and has left-sided spasticity. She has an 18-year-old son with whom she lives in an apartment. At the Eye Association she is part of the members' council.
The original interview can be found here: https://www.oogvereniging.nl/nieuws/leven-met-een-visuele-beperking-noel-van-ees/
