split image of Mark Obrien before and during swim

When Mark O’Brien was diagnosed in 2022 with motor neurone disease (MND), also known as ALS, his life was turned upside down.

MND is a progressive, terminal illness that affects the brain, nerves, and muscles. There is currently no cure.

The 54-year-old father-of-three from Bedfordshire, UK, admits that the months following his diagnosis were the darkest period of his life.

“Being diagnosed with a terminal illness which has no cure shocked me to my core,” he recalls.

However, determined to “turn a negative into a positive”, Mark has now set a world record for the longest distance swimming non-stop in open water with motor neurone disease.

Despite having difficulties using his right hand and leg, he swam continuously for five and a half hours, covering an incredible 11,000 metres (36,089 ft).

Mark Obrien smiling before his record attempt

Over 200 people showed up at Denham Lake in South East England to cheer him on, and he was joined in the water by his three children – Laura, David and Georgia – for the final 1,500 metres.

Mark’s efforts have seen him raise almost £25,000 for the MND Association.

He prepared for the record attempt for nine months, swimming over 320 kilometres in total.

However, the weather conditions he faced on the day of his attempt were much worse than any he’d experienced during training, adding an extra layer of difficulty to an already gruelling challenge.

Mark and his three children, Laura, David and Georgia

In addition to overcoming the strong winds and frigid water temperature, which significantly impacted his breathing ability, Mark suffered a groin injury after the first four kilometres and was forced to complete the rest of the swim using only his left leg to kick.

Mark persevered through the pain though, because in addition to raising money, he attempted this record to show others with MND that “the impossible can be made possible”.

“I would never ever have given up,” Mark said. “There were strict instructions given by me to my closest friends that unless I was unconscious without movement, then do not pull me out of the lake.”

After finishing, Mark developed hypothermia – his body turned blue and began shaking violently, taking over an hour to come back under control.

Mark Obrien holding GWR certificate

Since completing his record-setting swim, Mark has received many heartfelt messages from people who either have MND or have lost loved ones to it.

Looking back on his journey up to this point, he said: “It would have been very easy for me to curl up in a ball and accept my fate, however, the swim attempt gave me something personally to focus on and to make a difference.

“I did make a difference, and I intend to keep making a difference until my last breath.

“I am not sure how much life I have left, but I am grateful for each day, and I intend to live every day in the most positive way I can.”

Mark’s fundraising is supporting the MND Association’s Hertfordshire Branch and Bedfordshire Group as well as the Association’s research programme. Should Mark exceed his fundraising target, he will be considering supporting other MND Association branches or groups and charities. You can still support Mark’s fundraising by visiting his JustGiving page.

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