A cozy reading moment on the couch with her children? That became increasingly difficult for Ayla Hessels. Her eyesight deteriorated rapidly due to ADOA. But she came up with a solution: she wrote her own children's book. It's about the dog Harry, for whom a simple visit to the supermarket is an exciting adventure. From March 7, the whole of the Netherlands can buy her first book.
Ayla's youngest son loves reading aloud. He often takes a book out of the toy basket and climbs onto his lap. Last year, Ayla noticed that most books have an incredibly small font, which made reading aloud increasingly difficult for her. She therefore decided to make a book herself. First as a personal project. She had a booklet printed as a photo book and used it in her family. But on the advice of a friend, she sent her manuscript to four different publishers four months ago. Within a week, Boekscout called her back and said they wanted to publish her book.
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Ayla Hessels, 27, lives in Zwolle with her husband and two sons aged five and two. She grew up in Limburg and worked as a self-employed person until her vision suddenly deteriorated. “It started out really strangely. My right eye was blurry. I thought it was make-up that had been left behind, but not much later it became the same in my left eye.” When it didn’t improve, she went to the GP. He saw no inflammation or damage and immediately referred her to the ophthalmologist. “A lot of tests followed. The ophthalmologist consulted a neurologist and before I knew it, I was in the emergency room. My eye pressure and intracranial pressure were much too high. I was immediately given medication and admitted.”
What followed was a difficult period. “A week and a half in the hospital, pumped full of prednisolone. The doctors thought it was an inflammation of the optic nerve. I was so sick that I thought: this is the end.” Her condition improved, but her vision did not. The medical process continued. “I had tests for months, from January to June, in Maastricht. The doctors looked for rare conditions. At one point I started to doubt: is it perhaps all in my head?” But then came the result: ADOA type 9, a rare variant. “The clinical geneticist told me that she had never seen my specific mutation before.”
Ayla's eyes have always been a problem. She wore glasses before she could walk. But now she only has 16% vision left in total. "With my glasses on, I can still get it up to 50% on good days, but it remains difficult. When I'm tired, my vision is even worse." Working is complicated. "I used to work in the temporary employment sector and wrote job advertisements and motivation letters, I can no longer do that work. My temporary contract was not extended. I am now on sick leave at the UWV. Because I have a progressive disease, they see it as virtually impossible for a company to invest in me. That is why I will probably be declared unfit for work in a year. But I am 27, I want to do something. It is nice to be working on my book. I am thinking about how I am going to present it. In any case, I am going to read it at the old after-school care of my eldest and at the childcare of my youngest."
Normal
Ayla tries to keep her life as normal as possible, which she succeeds with a few adjustments. “My phone is set to the largest font possible and our new TV is two meters wide. My husband helps me cook and reads things to me when I am too tired.” She can just about drive. “My vision is on the edge. I am still allowed to drive, but I never leave home for more than half an hour. It is a real nightmare for me that I will be somewhere and not be able to go back. I go to Limburg by public transport. That is also a challenge, because at Zwolle station with its 37 tracks I cannot read the board with the departure times in the hall.”
Despite the setbacks, Ayla tries to stay positive. “I was really down, but that clashed with my character. You have two options: give up or do your own thing. My aunt raised me. She also had a lot of medical setbacks. She is a real idol to me. The way she always got back up… I try to do that too. Of course you can cry and swear when things go wrong, but after that you have to move on. And that is what I do. I have also become more spontaneous. I used to postpone things. If someone invited me to a concert, I often said: 'next time'. Now I think: I'm going, because I might see even worse in three days.”
