14 december 2023
Both of Rina’s sons (59) were born with Batten disease, an incurable, fatal metabolic disease. Berry died six years ago at the age of 23. It is certain that Mike (25) will also die from the disease.
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”Becoming a mother and having a family was what I really wanted and luckily my husband Bert felt the same way. Our wish came true. Bert and I had three beautiful sons: Berry, Rick and Mike. But our happiness was cruelly interrupted. Bert and I would lose all three of our sons prematurely. Thirty years ago I became a mother for the first time. I gave birth to a beautiful baby boy, Berry. More than a year later, Rick was born. We couldn’t believe our luck. We were extremely happy for a year and a half, but then disaster struck. Rick was one and a half years old when he died in a terrible accident. Berry, who was three years old at the time, really got us through that horrible time full of sadness. He gave us the courage to continue, thanks to him we still saw the rare bright spots that we so desperately needed after Rick’s death. With and for Berry we tried to get life back on track. And another pregnancy brought Mike into our lives. We were thrilled with our two healthy boys. We had no idea yet what awaited us. As a parent you have a vision of the future when it comes to your children. You hope that they will grow up happy and old, but not every child has the same opportunities in life.”
Incurable
“The first signs that something was wrong with Berry manifested themselves around the age of seven. Berry seemed to be lagging behind in his development, but that in itself was no reason to panic. There could be several explanations for this. We weren’t worried then. But over time, Berry suffered more complaints. His vision became less and less and his fine motor skills seemed to be disturbed, and epileptic seizures also followed. An intensive period of doctor visits and examinations began and finally the diagnosis came that would change our entire lives: our then eight-year-old son suffered from Batten disease, a hereditary, progressive metabolic disease that is incurable and always fatal. Our other son Mike was also tested and he too was affected by Batten. What are the chances that two children in the same family will suffer this terrible fate? We had never heard of this disease before we encountered it ourselves. Children with Batten disease appear healthy at birth, but symptoms usually appear around age 6. In most cases, the symptoms start with poor vision, which will lead to total blindness. Epileptic seizures, loss of muscle strength, speech, motor skills and memory follow. In fact, a child goes through a reverse development: it does not gain strength, but loses more and more functions. There is no treatment yet for Batten, the disease cannot be cured. However, a study is currently underway at the Wilhelmina Children’s Hospital, the results of which offer hope for the future. There are breakthroughs, but there is still a long way to go and a lot of money is also needed. Hopefully someday a cure or treatment will be available, but right now all children with Batten share the same terrible fate; they will die young.”
Respect
It is an end that cannot be avoided. The course of Batten’s disease is like a spiral staircase, a doctor once said to me and I found that description both very apt and true. The health of a child with Batten declines, which is irreversible, but how quickly, by how many steps at a time and in what way is not certain. Maybe you can hold on for a while, sitting on a step, but you go down. The first time after the diagnosis you don’t know where to look, you can only think one thing: I’m going to lose my children. Once the worst of the panic has subsided, you realize that the time you will have with your children will be limited and for Bert and me that was the moment when we decided to get the most out of life with our boys. As a parent of a child with Batten, you have a terrible road ahead of you, but how you deal with it is up to you. You can hope all you want, but it won’t change the outcome. Bert and I chose to live life as much as possible and we did so until the end. Seeing your sons go from running, jumping children who can do everything to total care dependency is no small feat, but we experienced every minute together. Neither of our boys ever complained about what happened to them, about what they had to endure, no matter how bad things sometimes went. I have tremendous respect for the way Berry and Mike dealt with their illness and all the things they lost along the way. They never squeaked, they were so incredibly strong and brave. If your children are doing so incredibly well, who am I to give up? Berry looked exactly like his father. He was a very strong guy, very energetic and full of life, a cheerful and helpful boy, a really wonderful child. Always present, yes, but I actually liked that. I enjoyed Berry with all my heart. A child with such a strong character, but with a body that would let him down. Berry died on Wednesday, January 4, 2017. He was 23 years old.”
Own life
“Mike, who is now 25, has a very different disease progression than Berry’s. With Mike, Batten has manifested itself earlier, he has remained more childlike. Mike has had a tougher road than his brother, but we are heading towards the same end. It remains to be seen how things will continue with Mike. He’s home, he doesn’t need anything anymore. Mike can no longer speak, gradually a child with Batten starts to live more and more in his own head and that is what makes it so cruel. The most difficult situations are those of pain, fear and panic. At those moments you break down inside, but all you can do is be there for your child and try to make it as bearable as possible. We have always been there for our children with full dedication, both with Berry and now with Mike. When the boys were younger they spent a lot of time together and had a lot of fun together, but the disease gradually made them start to lead their own lives and we have always encouraged that. They also did not enter the same phase at the same time. Bert and I have always kept misery and loss away from our boys as much as possible. We never showed our own pain and panic, not even when Berry died. Mike realized something was there, but he didn’t know what exactly. You could tell Mike was concerned about the loss of Berry, but he couldn’t express himself or talk about it anymore. With both our children, we follow our hearts when it comes to the quality of life, options and care. Bert and I have chosen to largely care for our boys ourselves and keep them at home as much as possible. A choice that is difficult and sometimes heartbreaking, but one that we both feel best about. Fortunately, Bert and I are always on the same page in that regard. Looking back, we would do exactly the same thing we did. And it is precisely the certainty that helps us to resign ourselves to this fate.”
Empty hands
“The sadness is always there and sometimes it overwhelms you. Fortunately, Bert and I have a very large network of family, friends and acquaintances that help us a lot and we are very grateful for that. But the parents who had their children at the same time in their lives will see their children grow up and we will not. We will never become grandparents. Relatively speaking, we have probably put a lot more time into our children than many other parents, but we are left empty-handed. I sometimes have trouble with that thought, Bert can deal with it better than I can. This is not what I had hoped for as a mother. Life goes on with family and friends. Their children get married, perhaps have children of their own and find their own place in life. I am happy for them, but I would have loved to give it to my own children and ourselves. I wrote my book Given Everything to share my experiences and help others. ‘Enjoy it while you can,’ I would like to say to other parents, ‘don’t sit in a corner and cry, but get the most out of life. Take photos and films, create beautiful memories and above all, don’t take anything for granted.’ Another important reason why I recorded our experiences in a book is so that the children of that time can still read as adults who Mike and Berry were. Our sons have not lived in vain. They made me a mother and I am very happy that they came into our lives. They are worth all our tears of sadness and happiness. Berry has been cremated, his urn lies in the grave where his brother Rick lies and where Mike will one day lie. Unfortunately it’s not possible, but if I could ask my children one question that I would love to hear from their own mouths, it would be: did we do it right, boys?”
What is Batten disease?
Batten disease (Batten Disease, type CLN3) is the name for a group of hereditary metabolic diseases in children. If your child has Batten, nothing seems to be wrong until about the age of 5. This is followed by an accumulation of problems, such as severe vision loss, epilepsy attacks, memory loss and dementia. The children end up in wheelchairs and lose the ability to communicate. The death of the child inevitably follows, usually between the ages of 15 and 25. Photo captions
Text: Lydia Zittema Photo: private property
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2023-12-14 13:45:40
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