His Beautiful Smiles

Searching Cure for Progressive Degenerative Disease

 

CFDの診断まで: 3~4歳 (Until Diagnosed CFD: 3-4 yrs old)


Edit Category CFDとは (About CFD)
3歳4ヶ月。立って歩いているのもやっとな感じ。学校、家でもよく頭から転んで傷だらけ。このころ医者に、検査の結果は問題ないが、脳性まひの一つの運動失調の疑いあり。今後、普通の子のようには成長しないと言われる。言われたときは、何も考えられなかった。目の前、頭が真っ白になり、ただシーンとした時間だけが経っていた。その時間はかなり長く感じられた。ママと二人で泣いた...

3 years and 4 months. Still keeping standing and walking but very unstable. He was often falling at school and home, so he had many wounds on his face. Around that time, the doctors told us that his symptoms are those of cerebral ataxia even though no physical evidence was found. We were told that he would never grow up normal like other kids. We could not think about anything when we first heard it. Nothing was in my head or in front of me. Everything looked blank or empty and the absolute silence dominated the room. It felt lasted very long, and my wife and I were in tears more than ever before.




3歳6ヶ月。上のビデオからたった2ヶ月で立つのも困難になった。
Just 2 months from the video above, at 3 years and 6 months, he started having trouble standing up.



3歳10ヶ月。自分では立てなくなった。病院でいろんな検査をしたけど未だに原因不明。痛かってよね~。様々なサービスを受けるため、症状から脳性まひ・運動失調と診断確定。しかし、このころ、担当の医師が思い当たる非常に稀な病気の検査のために髄液をとる。結果が出るのが数ヵ月後。毎日不安で不安でしょうがなかった。

Became not able to stand up by himself at 3 years and 10 months. He went through various tests at the hospital, but the exact cause was still unknown. To receive various services he needs, he was officially diagnosed as cerebral ataxia. But his neurologist had some idea on a rare disease, so they took his Cerebrospinal fluid (CSF) to test it. I was worried about everything everyday...



この数ヶ月後、検査の結果が出て、非常に稀な病気である脳葉酸欠乏症が判明。2012年11月のことだった。最初の受診から約2年。もしかしたら薬で症状が少しよくなる可能性が出てきた。空が抜けるような青空だったのを今でも覚えている。

A few months later, the results came back and found that Leo has a very rare disease called Cerebral Folate Deficiency (CFD). It was October 2012 and two years had passed since Leo saw the doctor for the knock-knees in 2010. The neurologist told us that there is a potential that he gets better with medicine. I still remember that the sky was very clear back then.

Newer Entry障害者差別禁止法 (Disability Discrimination Act)

Older EntryCFDの診断まで: 2~3歳 (Until Diagnosed CFD: 2-3 yrs old)

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プロフィール (Profile)
カリフォルニア・サンディエゴ郊外在住。失調症の息子のことを中心に、日米の障害児事情の比較や、ふと思ったことなどを書いてます。コメント、TBフリーです。

From San Diego, CA. Topics on my son with ataxic CP, US-Japan comparison on physically-challenged children, and just some tweets from life. Comments welcome.

leosena

Author:leosena
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