Feb 9, 2012


Hajime often writes this word with his foot.


He wants to be a child. No matter how old he is, he is my loving child.
I respond by touching his foot, and he responds back by rubbing my hand with his foot.

A happiest moment like this maybe taken away soon.
It makes me sigh and I can't think of anything.
I hope such a day will never come.

Hajime seems much calmer after a session with a social worker(Tracy).
He is enjoying a game today.
There are not so many people who can open up Hajime's feelings.
Hopefully we can continue sessions with Tracy.
It would be really wonderful if Hajime could feel better by expressing his feelings.

I feel sorry for not being able to stay right next to Hajime all the time.
I wish I could. It would be so great.

I just want to give him hope to live for.

(Translated by Yoko B.)


  1. Hozue-san, Hajime-san, my name is nid. I and my family live in Bangkok Thailand. I would like to tell you that you are not alone facing this illness. We also share the same destiny, my mom has als as well and start about same time Hajime-san was diagnosed. We cheer up each other everyday.
    Hajime has a kind hearted and always care about other feeling and i cannot agree more about his smile can heal all suffers. I'll write again and tell more story about Thailand.
    Nid 宗美婵

  2. Hozu,

    I know what you are going through. I know that this is a very difficult time for you and your family. My son was also diagnosed with a fatal neuromuscular disease called duchenne muscular dystrophy. It does not affect the motor neurons like ALS does, but it directly affects the muscles. My son's disease will cause him to eventually be completely paralyzed from the neck down. At age 8, he could no longer walk. By the age of 10, my son could hardly raise his arms up. Most boys with this condition do not live beyond 20. He will eventually lose the ability to use his hands and may start to choke on food. His heart or lungs will collapse since they are a muscle too. I will pray for strength for your family. Also, if you would like to follow my son's blog its...http://myangx.wordpress.com/

    Mainhia Yang