Light Up Cheltenham to raise awareness of incurable disease

Cheltenham Business Improvement District (Cheltenham BID) will light two major buildings in a special colour scheme in support of the Motor Neurone Disease Association charity during its Light Up Cheltenham event.

The Queens Hotel and 95 The Promenade (to the rear of Neptune’s Fountain) will be lit in orange and blue, the colours of the charity, on the weekend of 8 and 9 February.

The lights will be changing colours in support of two local people who suffer from Motor Neurone Disease (MND). Mark Morris, aged 49, is the well-known businessman who ran The Flower Man for many years, and Alex Edwards, 50, is a legal secretary at Wiggins Osborne Fullerlove Solicitors, who are based at 95 The Promenade.

Motor Neurone Disease is a rare condition with about two in every 100,000 people diagnosed in Britain each year. The disease affects the nerve cells in the brain and spinal cord, causing the function of motor neurons to break down, making everyday activities increasingly difficult or completely impossible. Over time, the condition becomes progressively worse as the muscle weakens.

Mark only realised something was wrong in September 2018 when he tried Pilates to help with flexibility for upcoming races. He found he could not lie on his back without running out of breath.

It was not until February last year that he was referred to a neurologist who told him within days that he had Motor Neurone Disease.

Mark said: “Mine has a life span of 18 months, but who knows? I have cut a lot of stress out of my life and sold the business so you never know.”

Alex and her husband Paul, of Whitehorn Drive, Cheltenham, have three children and she says her life changed in October last year when she was diagnosed with Motor Neurone Disease.

She had been leading a healthy and active lifestyle but hadn’t been feeling well since January 2018. Her father also had MND and died when she was 13.

Alex said: “It is such a hard disease to diagnose so I had eight months of not knowing, but I knew it wasn’t going to be good.  When I was told, it was devastating but also a relief in a weird way to find out what was wrong with me.

“It is a cruel disease as there is no cure (yet) and it’s so unpredictable.  My father had the disease for 18 months.  I have been told I have the slow version but who knows what slow is?

“I have the most supportive husband and kids and wonderful friends who keep me going, and going is what I am going to do. Live every moment I can to the full and make as many memories as I can. Life is totally for living. Who knows what the future will hold.”

The Motor Neurone Disease Association charity will be carrying out a street collection over the two days and handing out awareness leaflets.

Chris James, Director of External Affairs at the charity, said: “It is essential that we raise awareness of MND so people understand what a devastating disease it is. Having prominent buildings in Cheltenham lit up in Association colours is fantastic for awareness and we are grateful for the support of everyone affected by MND in Cheltenham who made this possible. Together we can make a real difference for people affected by MND.”