Twenty children in the UK are diagnosed with ataxia-telangiectasia every year Progressive condition will slowly rob Evie of her physical abilities. There is no known cure <\/p>\n
By Claire Bates<\/p>\n
Last updated at 7:50 AM on 29th February 2012 <\/p>\n
If you saw Evie playing with a group of her school friends, the only difference you might notice is that she is sometimes a little unsteady on her feet. <\/p>\n
Tragically her 'wobbly legs' are due to a devastating underlying condition, that will slowly rob the bright blonde girl of her physical abilities while leaving her mentally alert.<\/p>\n
The rare disorder known as ataxia-telangiectasia - A-T for short - is a progressive neurodegenerative disease that affects around 20 children in the UK each year. Most youngsters with the condition are wheelchair-bound by the age of 10 and few survive past their 18th birthdays. <\/p>\n
Big sister: Evie, 5, (pictured left with her brother Wilf, 3) has a condition that causes progressive disability and premature death. Her parents are campaigning for better awareness of the disease<\/p>\n
Evie's father Toby Read, 37, said the day he and his wife Emily had received the diagnosis in September 2011 was the worst of their lives.<\/p>\n
'We had read enough to know that it was incurable and that it would do terrible, terrible things to our daughter,' he said. <\/p>\n<\/p>\n
Original post: Twenty children in the UK are diagnosed with ataxia-telangiectasia every year Progressive condition will slowly rob Evie of her physical abilities. Continue reading
\nEvie Read is an active five-year-old - but ataxia-telangiectasia will rob her of ability to speak and walk while ...<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"