What is Ataxia-Telangiectasia?
For parents, getting a diagnosis that their child has ataxia-telangiectasia, is an extraordinarily difficult thing. The disease is neurodegenerative, because portions of the brain which control speech centers, the cerebellum, progressively degenerate, making it difficult for children to speak without slurring, and eventually impossible for children to speak or write. Later, children with ataxia-telangiectasia lose control of most muscular movements, and many are confined to wheelchairs within a few years after the disease is noted. There are further difficulties with ataxia-telangiectasia. About 70% of children who get the disease will also get cancer, and most children with this condition have poor immune systems, making them particularly prone to respiratory infections. The children who don’t succumb to cancer or disease still have markedly short lifespans. They may live until their early 20s, and a few people with the condition have lived to be 40. In general, the lifespan of a chil