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 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.

Just 2 months from the video above, at 3 years and 6 months, he started having trouble standing up.


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...


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)


05 2024
- - - 1 2 3 4
5 6 7 8 9 10 11
12 13 14 15 16 17 18
19 20 21 22 23 24 25
26 27 28 29 30 31 -

04 06

プロフィール (Profile)

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.



検索 (Search)
QRコード (QR Code)