For the first few years after he was born, Kyran – the middle of three boys growing up in Chilton, County Durham – seemed perfectly healthy. Six weeks later, in March 2011, his blood results threw up a devastating discovery: Kyran had juvenile Batten disease, a neurodegenerative disorder. The life expectancy for people with juvenile Batten disease is late teens to early twenties. As Batten disease is an autosomal genetic disorder, both parents are unaffected carriers of the mutated gene, but have a one in four chance of a child inheriting both faulty copies, and developing Batten disease. With no cure or treatment available, Debbie and Carl tried desperately to come to terms with Kyran’s future outlook.

Source: Daily Mirror September 06, 2020 06:00 UTC