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.
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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