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

By Claire Bates

Last updated at 7:50 AM on 29th February 2012

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.

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.

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.

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

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.

'We had read enough to know that it was incurable and that it would do terrible, terrible things to our daughter,' he said.

Original post:
Evie Read is an active five-year-old - but ataxia-telangiectasia will rob her of ability to speak and walk while ...