Her eldest son Giuliano passed away in 2016 from Huntington’s disease. He was only 15 years old. But it doesn’t stop there for Claudia (44). Her other two children Damiano and Serena also suffer from the same disease and therefore have no future prospects. “I’m in a kind of survival mode.”
Claudia: ‘The news that Giuliano had Huntington’s disease hit like a bomb. The world is literally falling from under your feet. When Damiano and Serena later received the same hard diagnosis, you don’t know where to look at all. It’s so unreal. According to the neurologist, it was impossible for all children in one family to develop Huntington’s juvenile form. And yet it is so. Unique, in the most negative sense of the word.
World collapses
Huntington’s disease is a hereditary disease and is a combination of ALS, Parkinson’s and Alzheimer’s. Giuliano was 4.5 years old at the time and had to go to the GGD just like any child. There I was told that he had a motor disorder. How crazy, I thought. He’s never had that problem before. Suddenly he could no longer cycle and kept losing his balance.
For two years I went to see the pediatrician, but each time it was dismissed as attention seeking. Until a neurologist came by and recognized certain symptoms. Giuliano was then hospitalized for a week for all kinds of tests. After four days it was already 95 percent clear: Huntingon. He was the youngest child in the Netherlands to be diagnosed with Huntington. I had never heard of it myself and started searching the internet like crazy at home. Your world is literally collapsing.
stay alone
Because it is hereditary, my ex-husband had himself tested three days after Giuliano. He also turned out to have it. We were already divorced at that time, but that was independent of the diagnosis. I couldn’t get Damiano and Serena tested right away because I had to wait for them to show any symptoms first. But actually I already knew enough for that. Huntington can be recognized by certain movements. Damiano was getting worse and worse and Serena got a lot of trouble with sore legs at one point. The worst thing is: they could see in Giuliano how the disease was gaining the upper hand. That prospect is, of course, terrible for them. Together with my new husband I also had a daughter, luckily she is Huntington-free. But this is also very difficult for her, she knows that she will soon be left alone.
Euthanasia
Giuliano passed away in 2016. He continued to deteriorate and spent the last nine weeks at the UMCG in Utrecht. In the end, he was completely freaked out and only wanted one thing: to go home. Then I knew it was over. At home he died at 4:30 am with a smile on his face. Huntington is an agony. Yet a euthanasia declaration is not allowed because the disease partly consists of Alzheimer’s, and then you are no longer seen as mentally competent. Inhumane, if you ask me. After his death, I told myself not to sit on the couch in sweatpants every day. I couldn’t, because I have two more to take care of. For that reason, real mourning never really happened. Sometimes I think: the blow of all this is yet to come. Now I’m purely in survival mode. That doesn’t mean it isn’t cozy here at home. We laugh a lot and try to live as much as possible as a normal family. I treat Damiano and Serena just like I treat my healthy 11 year old daughter. They also need boundaries.
squeezing hands
Huntington’s most commonly affects people over the age of 40. From that moment on you have about ten to fifteen years to live. My ex-husband is also in his final phase at the moment. If the disease is diagnosed under the age of twenty, they speak of the juvenile form of Huntington. My kids all “started” under the age of ten. Serena and Damiano are now fifteen and nineteen, and I can already squeeze my hands with that. How are they now? Fortunately, they can both still walk, but moving is getting worse. Damiano’s hand is also completely crooked. They still manage to talk a little bit, I’m the one who still understands them. Both also suffer from OCD and psychosis. At Serena, for example, all doors must always be closed, and the plug must be unplugged everywhere in the evening. Damiano had kidney stones last year and is still hanging in there. He attributes all the aches and pains to kidney stones. He can no longer hold his head up, because then his stomach hurts. It’s between the ears, but it costs him mountains of energy.
pawing
I worked as an assistant manager for 21 years, but in May 2015 I was forced to quit my job. With pain in the heart. I would have loved to continue working, but Giuliano needed 24-hour care and the results of the other two were also coming. It was in and out of the hospital, it just couldn’t be combined anymore. I don’t think there is a boss who wants me now either. It’s a shame, because I really like working and really don’t prefer to sit at home. That’s why I volunteer as much as possible. I get energy from that and it’s a nice distraction. Yet it continues to grow. My husband is abroad during the week, so a lot comes down to me. Fortunately, I have many lovely people around me who are immediately ready for me when I call them.
‘Every house has its own troubles’
How do I stay upright? By enjoying the little things as much as possible every day. Serena likes to bake a cake with me, which we then take to Grandma’s. That’s really her moment. But she still prefers to go to a special out-of-school care. There she has routine and her friends. You know what it is, Huntington’s not the only deadly disease out there. When it comes to an incurably ill child, every parent feels the same. It’s the worst there is, that’s why I protect myself from falling into depression. Every house has its own troubles, and this is ours. My grief is no worse than anyone else’s grief. I relax by volunteering and painting my house a different color. But if I start working with paint, I know I’m not feeling well. And now, let me knock it off, our house has been the same color for a year and a half, haha. So it’s actually going pretty well. And don’t forget: we’ve been in this situation for fifteen years.
Future
In 2017, there was a prospect of a medicine for a while, but that turned out to be nothing. Now they are back on something that is in the second test phase. It doesn’t stop the disease, but it slows it down. My children are still very young, so every extra year is of course very valuable. But because Damiano and Serena are both not yet 23 years old, they are not allowed to participate. That’s so harsh. There is no prospect of a cure. If that ever happens, it will be too late for my children. Yet they enjoy life to the fullest. Because Huntington makes you very forgetful, Serena prefers to communicate via Whatsapp. She also has a speech computer, but she hardly uses it. Purely because it doesn’t remember anything. Whatsapp is like a diary for her. She then scrolls all the way back to see what happened. She has also developed her own ways of eating and drinking, so that she remains independent for as long as possible. I think that’s so special to see. It inspires. My future looks very dark. But I probably don’t stop there. We live now and enjoy all the beautiful things that pass by.
Text: Elke Agten
Foto: Getty Images
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