Episode #1 ADOA podcast: Meet new chairman Wouter Jongerius!

Below you will find the transcript of this podcast.

00:00:03
Maud: Welcome to the ADOA Podcast. ADOA is a very rare hereditary eye condition. My name is Maud van Gerwen and I am here with…

00:00:11
Leon: Leon Augustijn. Together we will talk to professionals and experts about their view on ADOA. Welcome to this podcast.

00:00:22
Maud: Today we are here with Wouter. Welcome Wouter!

00:00:27
Wouter: Thank you!

00:00:28
Leon: Welcome!

00:00:28
Maud: Can you start by telling us a little bit about yourself? Who is Wouter?

00:00:31
Wouter: Yes, I am Wouter Jongerius, owner of a construction company in the Westland; 152-year-old construction company, taken over from father to son, father to son; and small entrepreneur in the construction industry, where we are somewhat involved in villa construction, extensions and renovations. And private situation: wife and children; sweet wife, two nice daughters. The youngest daughter with ADOA: ten years old, and my eldest is twelve years old.

00:01:08
Maud: Okay, that's your link with ADOA indeed. Your youngest daughter has that too, right?

00:01:13
Wouter: Yes, yes, that's right. We found that out a bit later in the end. We didn't know it from birth, eventually we got there after some 'struggles'. Eventually we do notice it when we cycle to school, for example, certainly with a rising sun, sun in our faces. The intersections we pass are not all equally safe, and the motorist cannot see that an ADOA patient is cycling past. That results in the motorists understanding that when she brakes very late or almost parks against the front of a car, something is sometimes missing. As well as in the private situation; if we of course want to go to sports, and it is evening, it is a bit darker, we cannot send her to sports alone. We will have to cycle next to her to take her to sports, even if it is in our own village. We definitely encounter that, and we cannot let her go alone.

00:02:15
Leon: And do you still see it in other things?

00:02:19
Wouter: Certainly, if we just watch in the house too. Elize will always sit closer to the TV to be able to see the screen, as well as the texts that pass by if it is a foreign text; she is ten years old, she does not speak all languages ​​at that moment. Also with handball, if we look at that. Handball is a very nice sport, she can still play it at the moment, but we do need to make a number of adjustments for that. They will have to play handball with a brightly colored ball, and the shirts will have to be clearly distinguishable from each other, to make that handball game fun for her too. And we try to communicate that in advance. Most clubs understand that, but even then you sometimes have to switch as parents. For example, we had a handball match where we asked if they could please play handball with an orange ball, for example. The coach says: “No, why? Don't be so stupid.” That is a very easy statement, which is quickly placed, but it takes some getting used to for us because, ultimately, it directly affects your child and you have to explain why we still want them to play handball with a different orange ball.

00:03:26
Leon: Yeah, yeah. And what does that do to you as a father? Those discussions?

00:03:30
Wouter: That hits you hard unconsciously, because ultimately you just want to have a child who is normal in society and can participate in everything, and when it finally comes down to talking about it as if it is unique, it always hurts. Every child is unique, that is true, but when it comes to adjustments it is always very unpleasant to share that and discuss it. I always want to commit myself to the ADOA Foundation in the context of it being a good cause and that it is close to me. I will tell you something about my daughter, so that you know a little bit about who she is and what she does. I have two daughters, one aged ten and one aged twelve. My ten-year-old daughter has ADOA, my eldest does not as far as we know. There is also no indication of it. Now we did not have that with our youngest daughter either, so that does not say everything. The basis is that you always have to be alert with children to what is happening there. With us it was discovered in a different way, but yes, in the end we know it now and we can act accordingly.

00:04:34
Leon: Because how did you find out?

00:04:36
Wouter: In the end it was the school doctor who came up with it. They had been conducting tests since the first years of primary education. It turned out that she did not see what she was supposed to see, with the types of circles and caps, which way the caps were, and ultimately with the letters. Then we thought for a long time, at least for two tests, that she was fooling us, because she does have a certain face. She is a lovely girl, very stubborn, but after two years it became apparent that that was not quite it. And then it was the school doctor who said: “It would be nice if we referred her to a doctor”. And they said “Go to a doctor in Delft”. Yes, that was a good idea in itself, but yes, we are also quite stubborn, if I may say so, because you want the best for your children. So we chose to first go to the optician in our village, and that is a major player in the renowned big club from Wateringen. And it turned out that they didn't see anything strange in it, because there was nothing wrong with the eyes. That makes it a bit exciting. Isn't it strange that we see at the school doctor that there is something wrong, and the optician says that there is nothing wrong?

00:05:59
Leon: And then, what did you do?

00:06:02
Wouter: We went to the ophthalmologist in Delft. The ophthalmologist in Delft did some tests, and he actually concluded the same thing. She got drops in her eyes to enlarge her pupils. They were going to do all the measurements. And that ophthalmologist said: “Yes, it’s not in the eyeball, it’s not in the lenses, so I advise you to go to Bartiméus, the Bartiméus Institute in Zeist, and we had to make an appointment to get there. Eventually, almost two months later, we went there and it turned out that it was ADOA. Actually, she had to do five tests right away. After the second test, it was clear that it was ADOA.

00:06:43
Leon: Can you tell us something about her vision now? Did they measure that?

00:06:48
Wouter: Yes, she now has 30% vision per eye. Combined, they call that 40% vision. And that is still a very high value in itself. She can still participate well in society in many things, but she does have some adjustments, because we do notice when the sun is low, when it gets dark outside, that those are real signals that she can no longer see. And also when just being outside. A visor is very nice because then she has no reflection behind the glasses. Sunglasses can be difficult at times, but can also be nice in very bright light. So you always need your adjustments when you go out with her.

00:07:28
Leon: Yeah and how? How did that work out within the family?

00:07:32
Wouter: In the beginning, you are in a kind of mourning mode when you receive this message. You really have to process it. We are not the same in that respect, my wife and I. My wife who initially suffered a bit more from the mourning mode, which is logical, because it is just emotional processing. And as an entrepreneur, I immediately looked at it differently; the approach mode, the overly active mode perhaps. But yes, everyone reacts differently, and in retrospect I think my reaction was a bit fanatical in that respect

00:08:11
Leon: Wanting to solve it.

00:08:12
Wouter: Wanting to solve it, but ultimately realizing that the solution is not there. The solution may be in the future, but for now there is no medicine. For now there is no chance to make it better, so for now you can only assist and help to make life as beautiful as possible, as it normally is, also for an ADOA patient.

00:08:30
Maud: Exactly. And she is still in regular education?

00:08:33
Wouter: Yes, she is in regular education and she is doing well. However, adjustments are needed to make it possible. Bartiméus provides good support for this with outpatient educational guidance, and there are also funds available for this. She has a larger laptop, she has A3-sized books, reading books. Ultimately, there are simply other options for this to make education possible. She is in group seven, we certainly also expect that she can also take the next step in regular education, albeit with the necessary adjustments. But that in itself does not matter, that does not matter at all. I also really think, she is dealing with it terribly well, she is a young girl, but as well as she deals with it, and as well as she does it, it is great to see. Of course they are also flexible, they also have a class, which is fortunately also a small class, where she is in, and where acceptance is also very high.

00:09:40
Leon: And, you just said that you are really into solving problems, you are an entrepreneur, actually a builder, so how did you use that?

00:09:49
Wouter: I use that in every possible way. On the one hand, your character has to be good as a parent. We have had some confrontations with schools. That is because ADOA is a disease that cannot be compared to dyslexia or other forms. It is quickly pushed into a corner. You have to be very vigilant about that, that this is really something different, and that there really has to be understanding for what she has. An example: there is an assignment and then she has to look through a toilet roll, but an ADOA patient cannot look through a toilet roll at all, at least, most of them cannot, and Elize certainly cannot. Then she sees nothing at all. And yes, that bit of understanding, that really has to come to the teacher that she cannot do that assignment. There are more things like that. To give a few small examples: she is absolutely at a good school herself, so I don't want to undermine the school either, that is not the case, but the reading time does have to be extended, because an ADOA patient needs more time to process it and to read it. And when the grade comes and it is a fail, yes, then we do have to talk to the school. And that's where you are as parents, as entrepreneurs, so to speak, what is inside you, that fire is then ignited. That makes you fierce, if I may say so at least, that makes me very fierce.

00:11:08
Leon: But partly it is also due to the unfamiliarity of the disease.

00:11:11
Wouter: Definitely, yes.

00:11:12
Leon: And that it may simply be unknown at schools.

00:11:16
Wouter: Yes, yes, also business-like, if we look at the business aspect; we always do the Christmas sweater campaign at Christmas. We try to make that as big as possible to create awareness for the disease.
We are also trying to get a donation from Ondernemend Nederland, as well as the private individuals who can absolutely donate to it. And also to really make the disease known, to give it a name. As an entrepreneur that is a bit easier, I think that too, because you have a base of support. I also certainly call on entrepreneurs, who are also closely involved with it, to encourage it. Because if entrepreneurs display it, it reaches many more people, and I have certainly seen that with the Christmas sweater campaign. But what do you do.

00:12:04
Leon: But what do you do with the Christmas sweaters?

00:12:05
Wouter: I now have this crazy habit of buying at least one Christmas suit every year. I wear Christmas clothes for two weeks. I manage to do that for more than two weeks, and those are formal suits up to suits that really stand out and don't directly touch on neatness. But that doesn't matter. It does require a lot of attention from everyone who addresses me with: "What are you wearing? What's wrong with you?" If I can then explain why I do it, they think it's very nice and very clever, as well as the fact that I can talk about it like that. But ultimately, if something is close to you, you ultimately want to make sure that the disease becomes known, and that money flows are started to stimulate the foundation. What I understand is that the ADOA Foundation, and what I also checked by the way, raises money that goes entirely to the charity. Up to 100% of the income goes to the research.

00:13:05
Maud: That's right.

00:13:06
Wouter: That is something I really support, because at some point a cure must become a possibility, also for this disease.

00:13:13
Maud: Yes, definitely.

00:13:14
Wouter: A disadvantage of a small support base, if you compare it with cancer and ALS, fewer people have it, it is therefore more difficult to market. therefore also more difficult to make it attractive to have someone tested. A pharmaceutical company does not just step in there. And there lies a very great power of the business community to look further for that to raise money.

00:13:40
Leon: But back to those Christmas sweaters. So suppose I join in, so I buy a funny suit, and then? How does money come in at ADOA?

00:13:50
Wouter: For all my customers I make a donation with the company. So for every customer who does it, I make a different amount every year, because the campaign is getting really big, and I have to survive somehow. And like my staff members, they all put on Christmas sweaters and Christmas clothes in the last week. Everything to make the campaign bigger again. It is also very widely supported in my company, as well as fellow entrepreneurs, as well as other fellow construction companies. I think that is…

00:14:22
Maud: Because, just to be clear, the idea is that you are going to have your picture taken with your Christmas sweater on social media?

00:14:28
Wouter: Yes, in the photo, you have to tag us in it, in the photo in Christmas clothes, and then also mention the ADOA Foundation. It doesn't even work directly until you mention us, for other construction companies, yes, I understand that there is a difficulty there, but even if they just add the ADOA Foundation, in links, to make the name ADOA and the foundation itself bigger again, and also that we see that the business community will then also get behind it more. Many companies have a one-off donation at Christmas for a good cause. If we manage to get that donation to the ADOA Foundation, I think that is really great to support the research.

00:15:08
Maud: Exactly, so everyone who is listening now, I actually don't know when we are going to broadcast this, whether it will be before Christmas, but people can then per photo, or per Christmas sweater actually in a photo, will a donation be made?

00:15:25
Wouter: Yes, yes. And inspire others to do the same, and also to participate so that others can donate to the good cause. But ultimately, all actions that are held there are good. I have seen on the ADOA Foundation site that it is much more of a campaign page to participate. I would like to heartily recommend doing that. Ultimately, the cure lies in research only if there is money. That is the key word, I think, to ever achieve a cure.

00:15:54
Leon: And how could you start such a campaign yourself as an entrepreneur?

00:15:59
Wouter: Ultimately, it is all about standing behind it yourself and wanting to support society with what you do. We can certainly also offer a helping hand from the ADOA Foundation to support actions and provide for this. They can make QR codes from the foundation. We also asked the foundation to do this and they did it for us so that they could scan the QR code and then immediately make a donation. And yes, that is actually the biggest way to get access for us. What you see with ALS and cancer, you also see a lot of great charities like bike rides and such. So ultimately, there are a lot of things that can be organized in creativity that people can do to still look for a source of income for the foundation and thus one day get a cure.

00:16:52
Leon: Yes, great, thank you.

00:16:54
Maud: Sure, yes, thank you. .

00:16:58
Leon: Thanks for listening to this podcast.

00:17:01
Maud: If you have any questions or would like to chat, please contact us via our website www.aoda.eu