My son Stefan was born on July 27, 1994. I was 25 years old and pregnant for the first time. I felt very well and had no problems during the whole pregnancy. The labour was rather difficult. First the water broke and then for sixteen hours completely nothing. I had no pain, no contractions. After sixteen hours of waiting, doctors decided to provoke the labour artificially. Soon after that my son was born.
Stefan weighed 3350 g and he was 56 cm long. The doctors told us that he was a healthy baby. Later, at home he would not breast feed very well and had to be supplemented. He stopped breast feeding while he was around three months. He had problems with biting and swallowing food. He often had upper respiratory problems.
When he was four months old we found out that he had some hip problems. For two months he was forced to keep his legs in a special position in order to “fix” his hips. That solved one problem but increased another. Because he wasn’t able to move for two months he became more floppy. He wasn’t able to roll or to sit but even then his neurologist saw no problems. We were on our own trying to find some help. We started rehabilitation at about ten months and Stefan started sitting at eleven. When he was eighteen months old he was able to stand. When he was two, he was walking with our help (we held him by the hand or he walked by holding onto the furniture). He started walking by himself at three years and one month. It was then that we realized he needed some mental rehabilitation as well. It wasn’t easy to find someone to help us with this matter.
At the age of two, he had an MRI which showed some brain damage, mostly left side of the brain. That he has CDC, we found out, when he was four years old. The geneticists told us that there was very little to be done to help him and that even with hard work we wouldn’t be able to achieve much.
From September 2000 he’s attending the class of youngest children (young by mental development, not by age) in a special kindergarten. Since then his upper respiratory problems have increased and sometimes he has some stomach problems as well. As the result he’s more at home than in the kindergarten.
Unfortunately, he has no contact with healthy children. Our home and his kindergarten are his whole world.
Because he has problems with his feet, he wears special shoes. He still wears nappies, doesn’t dress himself, doesn’t eat by himself… Though he’s able to pronounce a few words, he’s not using them. He prefers showing you what he wants. It’s much easier for him. Recently we started to practice picture communications. Today, Stefan is eight years old. He’s 134 cm tall and weights 30 kg.
I can’t say that living with child with CDC is hard. I can’t because I don’t know how it is with a healthy child. We all have our own road to go and I guess no one finds it easy. There was time when I asked myself – WHY ? I felt unhappy, sad and restless. In what happened to us I saw only problems.
Looking back I see that by choosing to react in the way I did, I was just wasting our time. Now I have another question – WHY NOT ? I learned it’s not about what we get from Life, but how we chose to accept it. I have a child with CDC. That’s the fact. I could be miserable and sad for the rest of my life, or I could try to see it as a learning possibility.
My son is retarded. He has many health problems, but he is not a problem. He’s a wonderful human being, cheerful, amusing and full of love. He likes dancing, music and nature. He sees a miracle in every little thing. The wind playing with the leaves, the flying birds, the sound of music bring him so much joy. It’s just like he’s saying to me: “Look, Life is beautiful. We didn’t ask for it. We didn’t have to do anything to deserve it, but it’s here. Isn’t that a miracle?”
I believe that there is a reason for everything. The children like my son are born for some reason. There is a meaning for their existence. They are born to bring more love to the world, and to remind us of what is important in life. They are not able to take care of themselves and therefore they need us to do that for them. They teach us unconditional love, and that’s the only love that exists. By taking care of them, we learn to take care of the Life. Isn’t that what we are all here for?
For two years we are members of your organization. From you we got most of the information about the CDC syndrome, and for that we are really grateful.
In July 2002 we went to Prague to get some medicine for an amino-acid and lipid therapy. After finishing our seven weeks of treatment, we can say that we observed some positive changes in our son’s behaviour. He’s now able to concentrate more than before the treatment. When we ask him to do something, he’s reacting more often. It seems that he understands more. He’s showing initiative for playing with us, and he’s interested in everything that is going on around him.
He produces more sounds, and he learned to say “mom”, and to use the word when it is necessary. He’s also trying to repeat some simple words. We think that we should continue this treatment and hope to achieve more positive reactions.
Well, that’s our story. Kind regards to you all.
Stefan and his parents