The reason why she's so heavily involved is that her niece, Rachel, who is 25, suffers from the disease. "It's absolutely terrible," says Agutter. "It's a deadly genetic disease and both myself and my brother Jonathan carry although, obviously, neither of us knew that when he and his wife Caroline conceived Rachel. It turns out that Caroline is also a carrier. When I got married to my husband, John, he took a test to see if he was a carrier. He's not, and both parents have to be a carrier to pass on the disease, so we knew we could try for children." What is even worse is that Rachel's life expectancy is only 31, which is the average.