Hello. I write down comments to your blog for the first time. I am 23-year-old and live in Japan.
I have vlcad deficiency, too! Also my disease may be a mild case. I've experienced occasional attack, staying in hospital, one operation, and consultation regularly. But I'm usually fine:)
I go to the university like normally people. I enjoy studying, club activity, and everyday like an able-bodied person. I hope your baby will get healthy life and enjoy everyday!
I am a proud mom of the 2 most amazing children. Landon is 4 and was diagnosed with non-cardiac VLCADD (Mitochondrial and Fatty Acid Oxidation Disorder) at 9 days old, from an abnormal Newborn Screen. Emeline was born in December 2010, and she is a carrier of an unknown VLCADD DNA Mutation. Landon is the only one in the world with his form of VLCADD and his mutation of the genes, as discovered by a DNA blood test in May 2010. The unknown mutation comes from me. So, we are teaching and learning as we go! Our goal is to help raise awareness for VLCADD, but also Mito disorders as a whole.
You look beautiful:)
ReplyDeleteHello.
ReplyDeleteI write down comments to your blog for the first time.
I am 23-year-old and live in Japan.
I have vlcad deficiency, too!
Also my disease may be a mild case.
I've experienced occasional attack, staying in hospital, one operation, and consultation regularly.
But I'm usually fine:)
I go to the university like normally people.
I enjoy studying, club activity, and everyday like an able-bodied person.
I hope your baby will get healthy life and enjoy everyday!
to you and your Landon, sincerely,
Arisa