This is my blog, about our life - our family and my daughter B who has a rare degenerative neurological disorder. Is this blog mean't to be humourous, a venting mechanism or just a diary of events? We will see.
Thursday, 13 November 2008
Catch a glimpse of B on video
She is part of a video made my her hospice. We have the full version here which she appears in twice but can't upload that. The short one on the site, its on the bottom right at http://www.chasecare.org.uk and B's smiley face appears quickly near the end.Tissue alert!
B was 2 when we knew something was wrong. She started to stumble and fall. After being told she would grow out of it and a misdiagnosis, at the age of six we found out something was possibly degenerating - the cerebellum - in her brain. A year later, it had further. At age 8, we got her diagnosis. Other parts of her nervous system are involved too. The cerebellum is responsible for balance and co-ordination. So until B became a full-time wheelchair user at the age of 10, she was my little wobbly pumpkin. Her condition is extremely rare (3 in 1 million) and is called Ataxia Oculomotor Apraxia 1.
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