A boy called Andre.....
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Andre at 9 Years of Age
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It was almost 17 years ago that our so Andre was born. A few weeks too early, but that happens to
a lot of babies. Andre was our first (and only), so when he was born we did not have a lot of experience.
He was a very, very nice baby.
From his birth there were problems. Problems that were not recognized by the doctors. He is just slow, they said, he has to grow first etc. etc. Then when we moved to another part or the country a new doctor suggested that an intense examination would be a good thing. He also thought that there was more to it.
(Andre was then 1 year old.) After a three week examination in the Academische Ziekenhuis te Groningen (one of the best hospitals in the Netherlands), they concluded that Andre had cerebellar hypoplasia, mental retardation, and possible olivopontocerebellar atrophy. However a complete diagnosis was not set
As with a lot of the CDGS children it took Andre a lot of time to learn how to sit and crawl. When he did he was and we were very proud. He crawled around and explored the living room with great interest and joy. At 4 he also began to talk. At first just one or two words but then more and more. (At this moment he always is talking. Although his pronunciation is not very fluent he can make everything clear. We sometimes say " is it possible to take the batteries out..!!)
From that same age he also began to have stroke-like episodes, mostly after a fall. At age 5 one of these stroke-like episodes caused him to lose his sight for a period of six months. We were very afraid then that his sight would never come back. Andre remained very happy however. How glad we were that after the other stroke his sight almost instantly was normal again. Very, very strange for the involved doctors. They did not know what to think then.
With age 6 everything seemed to go wrong. Andre was taken to the intensive care. He had a very severe pneumonia, a liver disturbance, blood coagulation problems, kidney disturbance, etc. etc. We almost lost him then. He was given blood transfusions but had an allergic reaction to them and went into shock. At last he made it. He had to stay in hospital (the Academische Ziekenhuis Groningen) for almost 4 months. During that period the head of the Children's Clinic, Prof. Dr. Heijmans, became especially interested in the mysterious illness of Andre. He appointed a doctor to do special research in his case. And after a period of two years (Andre was 8) the answer came.... Andre had the Jaeken-Syndrome, also known as CDGS. (Type 1 as later came clear) As far as we know Andre was in 1990 the first case in the Netherlands who was diagnosed with CDGS. At last some clearness. A little because at that moment there was little known about CDGS.
Andre has been through a lot.
A lot of examinations, a lot of strokes, a lot of pneumonia and antibiotics, etc. He has been in and out of hospitals a lot! He however always sees things positively.....
He can eat by himself and he likes to eat. (fried potatoes, chicken burgers, bread with a fried egg, etc.) He sits in a wheelchair that he can handle himself and likes to explore the world. Always happy, talking and singing. He likes to play, to listen to music, to watch TV, and has a great interest in many things around him. He likes to ride his three wheel-bicycle and his skelter. Always busy and curious.
Our little man (we call him although he has become a big boy now) may have his problems but we would not miss him for anything.
It is difficult to tell a story of 17 years of intense taking care of Andre in a short story. Whatever we will write down it can never tell the sorrows and fears but also the happiness and joy we have experienced these years. What the future will bring we do not know but who would want to know. One thing we have learned and that is to live each day for full. Don't wait for the future but live now.
Regina, Hans and Andre Hartog
The Netherlands
eff: 1998