Olivia Windle

INSPIRATIONAL CHILD 15-18 YEARS As a little girl, Olivia was a dancing queen who enjoyed regular ballet and tap classes and was incapable of sitting still when music was playing. Today, she still shimmies to Jessie J and Rihanna, but any steps she takes are tentative.

Olivia has juvenile Batten disease, a degenerative condition that has made her blind and is now robbing her of her ability to walk and talk. ‘We live in the moment because we never know what next week is going to bring,’ says her mother Michelle. ‘But Olivia’s smiles and determination make us so proud to call her our daughter.’

Batten disease is a rare and devastating neurological disorder caused by a mutated gene. Children are born healthy before developing symptoms and there is no cure. For Michelle, 42, and her husband Russell, a 43-year- old RAF aircraft engineer, the first signs that Olivia was unwell were barely perceptible. ‘She had a lazy eye and needed glasses from the age of three, but it wasn’t until she started school that her vision really deteriorated,’ recalls Michelle. Around the age of seven, tests found that the signals between Olivia’s eyes and brain were not working. Further blood tests confirmed Batten disease. ‘The consultant gave us a leaflet and said we’d need time to take it in,’ says Michelle. ‘And when I started reading about it, it seemed unbelievable that all these things were going to happen to our beautiful, vivacious girl.’

Although distraught, the Windles resolved to be positive. They went on holiday to Florida and, back home in Sheffield, ensured that Olivia remained active through school, dancing lessons and her weekly youth group. ‘We realised we could play a waiting game, or we could do our best to build memories. And I’m glad we had all those good times, because Olivia still Olivia, 17, with her parents and brothers Harrison and Findley. Right: with Prince Harry at the 2017 awards talks about them,’ Michelle says.

Olivia’s diagnosis had wider implications for the family. If two parents are carriers, as Michelle and Russell have since discovered they are, their children have a one-in-four chance of being affected. There was a risk that Olivia’s brother Harrison, then aged three, also had the disease, ‘but we decided against testing him,’ says Michelle, ‘partly through fear and partly through being aware that nothing we could do would change what was meant to be.’ Harrison is now 13 and well. The Windles have since had a third child, Findley, aged five, and tests during pregnancy showed that he was an unaffected carrier.

Before completely losing her sight at the age of 11, Olivia, a diehard Harry Potter fan, learned to read using the Moon touch system, an alternative to Braille, and practised walking with a cane. ‘We were able to prepare her while keeping life as normal as possible,’ says Michelle. Today, at the age of 17, Olivia faces new challenges. Her mobility and speech are declining and she needs medication to control seizures. Yet she attends her special school and still goes to freestyle dance classes at the club she first joined aged five.

‘Every morning, she has to put such effort into starting her day, but she never says, “Why me?” She’s an inspiration and that is why we nominated her for a WellChild Award,’ says Michelle. ‘Attending the ceremony and meeting Prince Harry has given her a huge boost. He made her feel special and it was a chance for us to tell Olivia just how amazing she is, too.’