Tag Archives: Wolf Hirschhorn Syndrome

Ollie’s Story

Ollie with his mum and brother

Ollie with his mum and brother

We are extremely excited to have been named Specsavers’ charity of the year for Wales this year. As part of this, we are looking at the stories of some of the families that we have helped in Wales.

Ollie Taylor was born a fighter. Diagnosed with Wolf Hirschhorn Syndrome at birth, a rare neurological condition that affects just one in 80,000 people, doctors warned his parents he was unlikely see his third birthday. But, now nine, Ollie from Penylan in Cardiff continues to defy all odds.

Ollie’s condition means he was born with no muscle control and limited strength. He has experienced seizures, delayed growth and learning difficulties.

The first three years were particularly difficult for Ollie and his family. As he was unable to swallow or support the weight of his own arms and head, he required around-the-clock care from his mum, 49-year-old Cardiff Metropolitan University lecturer Sian Taylor, with the support of medical professionals.

‘As soon as Ollie was born it was a fight for his survival,’ Sian says. ‘At times our family feared the worst. It was devastating.’

But when Ollie was three, his condition became less life-threatening and Sian began searching for brain injury and neurological support groups. She was keen to focus on her son’s cognitive development. It was then she contacted Cerebra.

‘As an academic, I was really impressed with the evidence-based research at Cerebra and felt compelled to seek their help,’ she says. ‘I’m glad I did, as they offered me a grant to cover the cost of innovative physical therapy treatment that isn’t available on the NHS and that I would have not been able to afford myself. We take him for the sessions three times a year in Oxfordshire and the outcome has been better than we could ever imagine.’

Ollie is now able to sit upright and walk with an adapted frame. Sian hopes that, one day, Ollie will be able to walk unaided. She has been so impressed by the work of Cerebra that she has become an ambassador for the charity.

‘The work of the Innovation Centre is fantastic,’ Sian continues. ‘They designed a larger version of a toddler’s ‘jumparoo’ that he was able to test, and also provided a walking frame that allows him to get around the house.’

Cerebra has also introduced Ollie and his family to others going through similar experiences.

‘I think what makes Cerebra so unique is how it has created a community for parents and carers who, like me, felt isolated before. I feel inspired to do my own research and find myself often speaking with the charity’s team and signposting them to things I’ve found online. It’s a two-way process that I hope will help others who find themselves in our situation.

‘I was so pleased to hear that Specsavers has pledged its support to Cerebra. Not only will this help raise vital funds that are needed, but also awareness of the charity so it can help even more families in need of support, like ours has been.’

You can find out more about our Specsavers partnership here.