A woman who lost both her brother and husband to Motor Neurone Disease like Eric Dane has disclosed the unexpected initial “secret signs” they displayed of the “cruel and devastating” terminal illness. Carol Deytrikh-White, 65, was bereaved when her husband Alex and brother Brian succumbed to MND in March 2009 and 2022, respectively.

Carol Deytrikh-White, 65, has opened up about the early and subtle indicators of Motor Neurone Disease (MND) that claimed the lives of both her husband and brother. The disease, known for its “cruel and devastating” impact, took her husband Alex in March 2009 and her brother Brian in 2022.

The recent passing of American actor Eric Dane, famed for his roles in “Grey’s Anatomy” and “Euphoria,” has drawn attention to this debilitating condition. Dane succumbed to amyotrophic lateral sclerosis (ALS), the most common form of MND, on Thursday. For Alex, the first sign of the disease was difficulty in running, despite his regular exercise routine of three sessions a week.

Brian noticed a different early symptom: his voice would deteriorate by the end of each day. MND is a progressive, incurable disease that leads to muscle wasting, eventually leaving individuals unable to move, breathe, or speak.

Former nurse practitioner Carol, from Huntingdon, Cambridgeshire, cared for Alex during his final months. She is now committed to raising awareness and funds for MND, describing it as a “cruel and devastating” condition.

“It affects the whole family and, for the majority of people who develop MND, it doesn’t offer any hope. But awareness has a two-fold benefit – fundraising for treatments, but also so that the people around you can have more empathy for those affected. There’s a human tendency not to deal with or talk about things that feel uncomfortable.”

Alex was physically fit and he and Carol would frequently play squash and go running together. However, before receiving his diagnosis, Carol recalls Alex, who served as an officer in the RAF, noticed his running was becoming more difficult despite training three times weekly.

She added, “MND impacts the entire family, and for most who develop it, there is little hope. Raising awareness benefits us in two ways: it helps fund treatments and fosters empathy among those around us. People often shy away from discussing uncomfortable topics, but it’s important to bring them to light.”

Following his diagnosis, as Alex’s health declined, his ability to walk, talk, breathe and sleep diminished. She ultimately cut back her working hours to just a few per week in order to look after Alex.

She said: “With Alex’s journey, the rate of progression was quick. He died within two years of the diagnosis.

“In the last two weeks I had to attend to Alex every half an hour because he was unable to swallow even saliva. I was attending to him all day, but I was also getting up throughout the night for his feeds and ventilation.

“I couldn’t go out, not even to the shops. But all I wanted was to be with him, I didn’t see it as a sacrifice. It was a privilege.”

Following Alex’s death, Carol felt as though she had been “thumped in the stomach” when her brother, Brian, received an MND diagnosis several years later. Brian – who was residing in Thailand at the time of his diagnosis – emailed his sister explaining he was losing his voice by the end of each day.

He had posted letters and test results back to Carol and the diagnosis was confirmed during a visit back to the UK. Brian returned to Thailand, with Carol travelling over to assist with equipment and care before his passing in 2022 aged 57.

Carol said: “Hearing Brian’s diagnosis years after losing Alex, because MND is still relatively rare, and they didn’t have a genetic relation, it was unbelievable as well as devastating. Brian spent the last three of four years ‘locked in’ in his bed. He couldn’t move or eat.”

Carol has since remarried and dedicates much of her time to fundraising for the Motor Neurone Disease Association alongside her husband, John White, 69. Alex had already generated substantial funds for the association and Carol was determined to continue his efforts and keep his memory “very much alive and celebrate his life”.

They are walking the entire coastline of the UK, which totals approximately 11,000 miles, though around 8,000 miles of actual walking due to the configuration of the paths, she explained. They have been completing it in sections over the past decade, whilst balancing time with their combined seven children, plus 11 grandchildren and one great-grandchild.

At their present pace, they expect to complete the challenge in four years’ time. The endeavour has generated £5,500 for the MND Association thus far.

She explained: “For other conditions, there is an element of hope, but at the moment, for MND, it’s not there. And hope is the last human instinct to go – I almost didn’t believe Alex was dying on the night that he died.

“But when you do watch someone you love die, you realise how lucky you are to have that day and the next. In my lifetime I want to keep fundraising and I want to see hope given for others diagnosed. I realise we’re privileged to have life and it’s our duty to make the most of it.”