Rob Burrow taught us a valuable life lesson through his fight with MND - Daxa Patel

His final words are powerful. He said: “I hope one day we find a cure and live in a world free from MND. By the time that you watch this I will no longer be here. I am just a lad from Yorkshire who got to live out his dream of playing rugby league.

As a father of three young children I would never want any family to go through what my family have since my diagnosis.

“I hope I have left a mark on the disease. I hope it shows to live in the moment. I hope you find inspiration from the whole story.

“My final message to you is whatever your personal battle, be brave and face it. Every single day is precious. Don’t waste a moment.

“In a world full of adversity, we must still dare to dream.

“Rob Burrow, over and out.”

His words were full of wisdom and humility. I never met this great man, but I remember when he arrived during the last Leeds 10k I ran. There was a big round of applause and a palpable presence of a great soul amongst us. It was a goosebump moment, a moment of pride to be almost sharing the same space as this great genius.

Rob’s personal battle with the degenerative condition motor neurone disease (MND) for which there is no treatment or cure became well known thanks to his courage and those who loved him. Rob Burrow was diagnosed with MND in 2019, two years after he retired from his 17-year playing career, playing rugby, during which he represented Leeds Rhinos and Great Britain. The journey included eight Super League Grand Final wins, three World Cup Challenges and two Challenge Cups.

MND is a rare condition affecting the brain and nerves. Symptoms include muscle weakness, twitches, slurred speech, and difficulty swallowing. The decline can be rapid. While physiotherapy can help a little, the patient will lose their independence.

I came to learn a little about MND, when I read a book by Christopher Spriggs, titled The Reason I Run. This book was a timely read as I read it weeks before my first ever London Marathon. Christopher’s uncle, Andrew Spriggs was a 39-time marathon runner when he was diagnosed with MND. He knew his running days were done but his nephew, Christopher, offered to push him in his improvised wheelchair in one last marathon. I believe they ended up doing four more marathons together. The book was my first introduction to the horrors of this disease, the impact on lives affected and how medicine had yet to offer a viable cure or treatment.

Those diagnosed with MND were silently suffering, but for the efforts of some extraordinary people including our very own Rob Burrow, who have brought to light the challenges of living with MND, and the need to find a cure.

It is astonishing how people with such a debilitating condition, and their loved ones can find within themselves the power, and passion to educate us, but they have, and we must thank them for that. We must use this knowledge to raise more awareness, including much needed funds to find a cure, and treatment for this condition.

Rob and his family were brave when they decided to talk about this so openly and thanks to them, many suffering from this felt seen, and validated for the first time. When we think of Rob, Kevin Sinfield, his former teammate, and best friend needs to be acknowledged too. Now an English rugby union coach, Kevin is known for his breaking records by running ultramarathons in record time to raise money for MND charities. One of these runs included seven ultra marathons, in seven days in seven cities. Together, Rob Burrow and Kevin Sinfield raised more than £15m in less than five years.

The day after Rob’s death, a ceremony took place at Seacroft Hospital in Leeds, attended by Rob’s family, to start the building work of a new facility called the Rob Burrow Centre for MND, which is funded by the money raised by the duo. For us, we have had the chance either to run the Leeds Rob Burrow marathon or support the runners, but we have directly or indirectly been inspired by Rob’s infectious positive energy.

What Rob Burrow achieved in the face of such a horrible disease, teaches us that we all have within us the power to do good even when we are going through hell.

His wife, Lindsey, and his children as well as the rest of the family will be going through a difficult time, we must salute their bravery.

It’s hard to find the words to describe Rob adequately. The main lesson he has taught us is no matter what, we must still dare to dream as every single day is precious.

Daxa Manhar Patel is a leadership coach, author and solicitor.