Kodai Kawano 16 years old
December 17, 1991-Febuary 4, 2008
Kochan was born December 17, 1991 in Chiba, Japan. He was a healthy, normal child who loved to run around. But when he entered in a nursery school, he often tripped over, and seriously hurt his head many times. I didn’t know why, but when he fell down, he could not hold his hands out.
He seemed to have lost his sense of balance.
He constantly cut his head by hitting himself directly onto the concrete surface or pavement, so he had many visits to the hospital to have stitches.
He had 22 stitches in total by the time he was 6. Also he seemed to lack sociability, and easily fell into panic. I felt he was a little backward, but for everyone else he looked pretty normal. Even a doctor did not admit that he had any problem.
After that, he entered the normal elementary school. But in the same year during the summer vacation, Kochan had an epileptic fit for the first time, and since then, his condition got worse and worse, with frightening speed. I had no idea what was going on! I had to keep an eye on his condition, so I gave up my work, and started a part time job to look after him. Later on, Kochan changed to a school for children with disabilities, and there he did his best. But it got to the stage that his seizure and stiffening got so bad that he couldn’t walk by himself any more.
My ex-husband didn’t even lift a finger to help, even when kochan was having a fit. It was all the same thing whether we lived with or without this guy since he never helped us. So I divorced him. Well, there were other reasons, too. One of them was his domestic violence. Such awful things! But I didn’t realize he already had an attack of HD at the time, and didn’t know that it was one of the symptoms.
Soon after our divorce, I took Kochan to the hospital where he was examined for a month to find out what was really wrong with him. (Later, I found out that the doctor carried out Kochan’s genetic test without our knowledge.) Two months later, Kochan was diagnosed as juvenile HD, by which time it was already very hard for him to walk, talk, or eat. I was brought into another room, and there the doctor explained to me about HD. He said, “ It will be too hard to look after Kochan all by yourself. You should leave Kochan in the hand of the care center.” I couldn’t accept this suggestion, and I had trouble deciding what to do for a long time. Then, at last, 6 months later, I came to realize that is was impossible to look after him while keeping my work. So I decided to leave him to the medical facilities reluctantly.
Since then, he has been in the medical facilities for 6 years. In the same time when he was admitted there, I quit a part time job and started working full time to support my children. I used to pick him up to the care center and brought him back home where he joined his big sister every weekend, and three of us spent a really good time.
A child allowance for Kochan was stopped when he was admitted to the care center, so it was not easy to make a living. But even after he had a stomach tube attached, I took him to various amusement parks. Later, as he began to have some breathing problems, I bought a suction machine (for phlegm) and an inhaler at my own expense. We went to Disney Land together many times even then. Disney Land is a FANTASTIC PLACE, isn’t it? That wonderful place made Kochan thrilled so much that some miracle happened. The place has a magical power that makes one feel exhilarated so much that a miracle can happen. While he was on a vehicle called ‘It’s a Small World’ with us, though he had already lost the ability to walk by then, he stood up in his excitement! And though he had difficulty in eating and lost his appetite, Kochan finished all the food in no time at the restaurant we went on the way back from our trip.
But 3 years ago, he had an ileus because of stiffening, and he had his intestine cut 20cm. Soon after the operation, he took a sudden turn for the worse, and his breathing had stopped! So he had an operation for tracheotomy at once. Since then, he can’t breathe without artificial respiration.
Now, I go and see him at the care center after my work instead of bringing him home. Kochan is 14 now. He takes a pile of medicines to avoid seizure every day, and he sleeps all day. But we sometimes communicate with Yes or No by his winks. He tells me what he wants by his winks, “I want to eat some chocolates” or “ Let me take a walk” and so on. What I want to do more than anything in the world is to grant his wish. His wish is mine, also. I would like to protect him as much as I can. His symptom may get worsen suddenly again. But I am determined to keep up with his condition, no matter what. And I always try to think of the best way to deal with his condition to take the pain away for him as much as possible. He loves Tigger and Winnie the Pooh.
He had endured a lot of hardships, but he was always worried about me, not himself. And he still watches over us ever so affectionately while he bravely keeps on fighting his own battle against the disease.