When Katie’s brother Christopher was diagnosed with Motor Neurone Disease in 1990 it was a complete shock to her family, but little did she know that this was the start of more than two decades of MND tearing her family’s lives apart. 

Christopher was just 40 years old when his symptoms started with a bad ankle causing him to walk with a limp, and he was referred to his local hospital in Middlesbrough for tests. He was recently divorced and had bought a campervan with the hopes of travelling around the world, but this all came crashing down when he was told he had MND and there was nothing doctors could do.

Katie spoke to us about how Christopher quickly deteriorated as his condition progressed:

“None of us had heard of MND or knew how it would change Christopher’s life, we all had hope that he would get better. Christopher soon lost his ability to walk and relied on a wheelchair, a breathing machine at night and support from live in carers. Despite it all, Christopher took it all in his stride and always kept his great sense of humour!”

Sadly, Christopher died just 18 months after diagnosis, leaving his mum, two sisters and brother behind.

20 years on, the unthinkable happened, Katie’s brother Robert was given the same devastating news as his brother, he had MND.

Robert’s symptoms weren’t the same as Christopher’s had been, so it never crossed the family’s mind that he could be diagnosed with the same condition that cruelly took his brother’s life.

Katie was reliving the nightmare her family first experiences two decades ago, and flew out to France where Robert lived to make special memories before saying the hardest goodbye. She told us:

“I saw how MND was slowly taking my brother’s life, but again, just like Christopher, Robert never lost his ability to make us laugh, I remember asking him if he wanted anything from the shop and he would make a joke and say “some more neurones.”

Katie did recognise how awareness of MND increased from 1992 to 2012, but couldn’t believe how little had changed in terms of treatment options and finding a cure, and Robert died 18 months after diagnosis, just like Christopher.

Sadly, the nightmare wasn’t over for Katie and her family, just five years after Robert died, his daughter Delphine was diagnosed with MND just after giving birth to her second child.

After already losing two of her brothers to MND, Katie knew this was a life sentence for her niece and that her two little ones would be growing up without a mother. Katie said:

“Delphine was one of the strongest people I met, after being told this heartbreaking news she just got on with life and put her new baby and little girl first, being the best mum she could possibly be, until at 40 years old, she took her last breath.”

Katie, who lives in Ripon, first heard about Rob Burrow’s diagnosis through his first BBC Breakfast interview, and was blown away by his bravery to share his diagnosis publicly and how this changed public awareness of the condition.

For Katie’s family, the community that Rob Burrow and Kevin Sinfield brought together, helped them feel less alone and connect with other people who’s lives have been impacted by MND.

When Katie first heard about the Rob Burrow Centre for Motor Neurone Disease she was amazed, she told us about the difference this would have made to her family:

“Our family felt like we were the only ones going through this experience, but having somewhere we could have gone to meet other people would have helped us understand it wasn’t just us going through this struggle. Everything is a battle for someone living with MND and their loved ones. So having one place where patients and their families could go to get the best possible support tailored to their needs, would really mean the world.”