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What is 'hypophosphatasia' ?

I was born only 3 months ago. My name is Naruaki and I am called 'Naru-kun'. To my regret, I am under medical treatment in the hospital. It has been 2 months since I came here. I do not know the name of my disease, because it is very difficult to me. But it seems my body stopped making bones just after I was born. I think this means I cannot grow up. When I drink milk, calcium in milk will not be used to make my bones but will flow into the blood. When much calcium flows into my blood, I feel bad and I lose my appetite. I heard my dad talking with my doctor, and what is worse, calcium flown into the blood may make stones in my kidney. If this happens, I do not know what I can do.

Before I was born, I had met the 'Winnie-the-Pooh' first. I have two big sisters. When I was still in my mom's tummy, my dad and two sisters went to Tokyo Disney Land. At that time they did not know if I am a boy or girl though, they chose a blue 'Winnie-the Pooh' for me and brought it back to me. ( I know the truth- the yellow one was more expensive- I heard it in my mom's tummy ) When the expected date of my birth was getting close, my Winnie-the-Pooh, who got a lucky charm, was waiting for me sitting in my mom's bed. 

For a while after I entered the hospital, my mom and dad never thought that my disease is so bad. So they sometimes got my doctor's OK and took me back home. But my big sisters are too noisy! I think I'd better stay here in the quiet hospital. I think it would be much better if I do not need to be injected.

I have put some weight around my cheeks and waist since I came here. But, you know, my bones have not been made well, while my stomach and lungs are getting big. Now my stomach becomes compressed by bones around, so I cannot drink enough milk these days. I am put on a drip at the moment so that I can get the minimal nutrition. But sometimes I feel like drinking something from my mouth and I can not help moving my mouth. One day, my dad gave me a present. It was a dummy! First I found it difficult to suck the dummy, but now I am really good at it. 

I always say 'Thank you' to my mom and dad. Of course I can not speak yet, but I can say 'Ah-Ah- 'or ' U-U-' and also I can smile to them. My head bones have not grown well, but it is lucky for me that the development of my brain has not been blocked because the space between bones (anterior fontanel) has become wider.

At night, my 'Winnie-the-pooh' always talks to me. 'Hey, I am the other self of Naru-kun . I can take your disease! Give it to me.'

This web was exhibited in Nov.16 2001