okkeOkke is our oldest son. He passed away on June 27, 2013.

When I was pregnant, we saw on the ultrasound that something was wrong with Okke. He had a bilateral cleft lip and palate and clenched hands. We had seen what I already knew from early on. Something is not right with our baby.

We decided to let him come with a caesarean. After birth, it was immediately clear: What a beautiful child, so strong but so fragile. Okke came quickly to the infant ward of the hospital. But only two weeks after birth the diagnosis was clear – Bohring-Opitz syndrome. So rare, so little is known about it. There has been much research done Okke. In his first year we had around 130 appointments in the hospital …

He had a bilateral cleft lip and palate, his eyes are prominent and he had wonderful long black thick hair. He had a bilateral hip dysplasia. He had feeding difficulties and failure to thrive. Cranial MRI showed partial agenesis of the corpus callosum. After three weeks in hospital we could take him home finally!

When Okke was three years old, we got from our geneticist to know that they have found the gene responsible for this syndrome. There is also an article in a medical journal published which Okke contributed.

Okke is a amazing little boy, we love him so much. But the concerns are still great. He suffers from several problems. At the age of two he gets a PEG tube. But still he vomit a lot and often. Every day two times, on bad days up to 15 times a day. He has problems with urination and constipation. He had epilepsy. He is very tired and sleeps a lot. He is completely dependent on aid. He can not sit or stand without support. But he can roll over. He can not talk. But he can let us know if don’t like it. We have to give him al lot of medications. The doctors are helping, but sometimes they know it any more. Okke had already eight surgeries and was a further many times hospitalized.

There are also positive things. He learned, he developed his own pace. He have learned to thumbing, he loved to sit in a circle, with the family or at the special needs child day care, where he was going three times a week. He loved listening music. He could relax in bath but didn’t like it very annoying things around and reacts with grumbling. Grumble, that he could do well – delicious. He loved his brothers and sister but not when they were crying. Gradually, he could enjoy a walk and driving in the car wasn’t longer so much worse. He responded to unknown people interested. That was not his first year of life – that was too much for him. And he loved to be hugged – for hours and for always.

En now he is finally laughing, singing and dancing!

Almost 6 years! A beginning and an end with tears, helplessness and grief. We are so grateful that Okke, our ‘Grote Beer’, with all his restrictions give us a time full of wealth and joy and lots of love. Okke, we miss and cherish every beautiful memory.

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