Buggenhout How to keep a mama and papa are right, when they hear that their child is never older than five years will be? “The time is too short to be sad. His birthday, a day after the diagnosis, we have three days celebrated. That we could not make him decrease”, tell the parents of Eben (1). He suffers from the syndrome of Tay-Sachs that less than one child per year.
The disease of Tay-Sachs is a stofwisselingsaandoening – a so-called opstapelingsziekte. A certain kind of fats in our body cells is not degraded, ensuring that they accumulate, and the brain damage. The disease is congenital, is usually reflected around six months, and can only occur when both parents are carriers. A crazy coincidence is it that Siri and Jan, a couple from the East-Flemish Buggenhout, all two the defective gene. And so 1 chance in 4 that their son Eben the disease developed.
Flat on his belly does Eben a nap. But in march he celebrated his first birthday. For the birthday party, that all weeks subject to fluctuations, had mama Siri cake and balloons ordered and personalized crown. Friends and family were invited. But to Ebens birthday lived Siri and Jan not as hoped. A day after the new year began, after all, their long search for what happened to their son on the hand would be. “He developed not like other children,” says Siri, a teacher in special education. “We assumed that he just used his own pace, followed and waited. To someone there of us on the show to remind made that it was not normal was that he put on his head, but still could not difficulty, and lying down looked. A blow in my face, but I am that person still, be grateful to us accordingly. A day later we made an appointment with the doctor and we were gone.”
Quizzical wittekopje
Quickly became clear that Eben is a metabolic disorder had, already knew about Siri and Jan not which. “Suddenly you go from a perfectly normal child, of whom you hope that it’s just a little behind is, to a seriously ill child. My biggest knock I received when. As we hoped, but didn’t know if we were allowed to hope. We came in a wachtstraatje. There are so few opstapelingsziektes for which a treatment exists. We made a list of what disease outcome and treatment knew. Tay-Sachs was there, too: intractable. So, when we calculated one day before his first birthday, heard that the disease was – how hard that news was – I had for myself is already a buffer built in.”
The realization that you cannot do anything to your child to heal, is heavy. We mourn all you need to do to someone who is still there.
Mama Siri
“Actually can, and you will want nothing else than in your bed crawl in and sad”, says Siri. “But that would not be fair to Eben. His birthday was a train where we had to take steps. For three days we partied: on the day we went to sea. The next day at Planckendael, with a whole gang. The party we just let them continue. How sad we all were, we had to make the best of it. We were allowed to him that party does not take it away.”