Souta-Krabbe Children in Japan

We are Yasuyo and Shinichi, parents of Wanaka, a healthy 6 year old girl, and Souta, a 2-year-old with Krabbe disease.

Souta, was born on May 18, 2000 6:44 am at full term. There were no complications during the birth, and he looked perfectly healthy! He was smiling and moving a lot at 2 months, though his milk intake didn't really increase.

At 3 months, he coughed a lot and we got concerned and took him to a clinic. Compared to his big sister, Wanaka, he seemed slow developing head control, but his doctor said not to worry. He was still a happy baby most of the time, but started to get very upset once in a while. At around 4 month, he became super-sensitive to noise and got very upset with it. He just didn't seem happy and doctors started to notice his developmental delay but just told us to observe at this point. He was still playing with toys using his hands, but cried a lot during the night, and we hardly slept. He still had a cute little smile for his mom, though.

At 6 months, Souta had 6 oz of milk from the bottle(!!!), though often he could only take less than 1 oz. He started to scream at night. He would calm down only when I held him, but this went on 5-6 times a night. We also did MRI, but there were no abnormalities found. By then, he was just miserable throughout the day. I wished I had a pouch like a kangaroo because I had to hold him all day to comfort him. Two hours' sleep followed by over one hour of screaming was typical, and poor Souta often lost his voice by screaming so much. He managed to smile for me still, but his smile was becoming increasingly more laboured.

November 21, 2000, he had a bath and I was moving his arms, then he smiled for me, and this was the very last time I saw his beautiful smile.

We run so many tests after tests, but there was just nothing!! What was going on?????

His pediatrician mentioned a possibility of this being caused by something undiagnosable. It really frightened us. Since no test was telling us anything, we could do nothing, we just had to wait and pray, but it was so hard to not knowing what was going to happen to him next. His body temp started to go up an down at 7 months.

At 8 months, we switched to a new doctor, and he told us this could be a metabolic disease. We hadn't even heard of the word, "metabolic disease"! He seemed to be settling down with his irritability, though still had a sudden cry out of nowhere. He started to have trouble swallowing, so the doctor prescribed something to thicken his milk and it did help. He had a 2nd MRI at 10 months and while waiting for the doctor's evaluation, Souta's grandma took us all to Tokyo Disneyland. It was so much fun and everyone enjoyed it.

Next day we got home from Disneyland, I took him to see the doctor for the MRI result. Being so used to getting negative test results, I didn't think much. However, they said to me this time, "the specialist was going to explain", and that made me worry right away. What specialist???

The specialist started to explain. I couldn't understand even though I tried so hard. Something complicated... Something not good at all... He said at last, "Souta wouldn't live to go to school." It hit me so hard, and I just broke down with tears right there and then. I kept crying on the way home and at home. I couldn't stop. The cute toys we bought at Disneyland for him just yesterday now looked so sad.

I had a good cry three times about Souta, but at the 3rd time, I thought to myself, "I can't waste my precious time with Souta just crying all the time". Still, my eyes well up with tears every time I think of him.

His hands and legs started to tremble. His movements looked involuntary and uncontrollable. He wasn't sweating and his temp was all over the scale. With Souta turning one year old, I had to go back to work since my parental leave was up. We moved in to Souta's grandparents' home so they would take care of Souta while we were both at work.

Souta was hospitalized for a week at 14 months. He was running a high fever, and to keep him hydrated, an NG-tube was inserted for the first time. It was a bit of a shock for us since we hadn't seen a feeding tube before. We understood, though, this was something very important to keep him alive.

His frequent vomiting ceased after his 2nd birthday. After going back to work for a year, the law changed and the parental leave was extended up to 3 years. So I applied for this right away and we moved back to our own place. Since I started to stay home with him, Souta seemed to be doing much better and stable. We even started to imagine that progression of the disease had halted.

Now he is almost 3. He has very regional sweating, poor body temp control, and when sleeping, often sounds like his tongue is dropping. He still eats a little by mouth, and seems to be aware when his mommy is around. He definitely knows when to complain. As soon as he is left alone, he starts to whimper like a little puppy!

I can't believe he's almost 3!!

Yasuyo and Shinichi April 1, 2003

Almost 1st birthday

His hands and legs started to tremble. His movements looked involuntary and uncontrollable. He wasn't sweating and his temp was all over the scale. With Souta turning one year old, I had to go back to work since my parental leave was up. We moved in to Souta's grandparents' home so they would take care of Souta while we were both at work. Souta was hospitalized for a week at 14 months. He was running a high fever, and to keep him hydrated, an NG-tube was inserted for the first time. It was a bit of a shock for us since we hadn't seen a feeding tube before. We understood, though, this was something very important to keep him alive. His frequent vomiting ceased after his 2nd birthday. After going back to work for a year, the law changed and the parental leave was extended up to 3 years. So I applied for this right away and we moved back to our own place. Since I started to stay home with him, Souta seemed to be doing much better and stable. We even started to imagine that progression of the disease had halted. Now he is almost 3. He has very regional sweating, poor body temp control, and when sleeping, often sounds like his tongue is dropping. He still eats a little by mouth, and seems to be aware when his mommy is around. He definitely knows when to complain. As soon as he is left alone, he starts to whimper like a little puppy! I can't believe he's almost 3!! Yasuyo and Shinichi April 1, 2003	Almost 1st birthday


e-mail us! Souta's Homepage (in Japanese) back to Krabbe Children in Japan

	Souta's Journey