Daughter's battle against rare disease proves value of life for Crewkerne dad
A young girl who beat the odds to reach the age of seven despite being one of only two people in the world living with a rare disease has inspired her dad to start a fitness bootcamp.
Sophie May Hughes, 8, of Kingswood Road, Crewkerne, has Pontocereballa hypoplasia type 6, a rare progressive form of Mitochondrial Disease which affects a part of her brain, causing it to shrink away.
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Mark Hughes of Crewkerne has started up a fitness bootcamp and Boxercise class, inspired by his daughters Sophie May, 7 and Molly, 3
Her dad Mark says there have only ever been four other children diagnosed with the disease and three of them died within the first 18 months of their lives – but Sophie May continues to fight on.
He says her determination is testament that we should all live life to the full.
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The former Marine has been inspired to start up “Mark One” fitness bootcamp sessions on the Henhayes Recreation Ground on Saturday mornings.
He said: “Sophie May was not expected to survive but after nearly eight years she still fights like a warrior every day for the thing that so many of us take for granted – life.
“During our last conversation with metabolic specialist Dr Pierre, based at Bristol, Sophie-May was actually the second-known survivor with this condition. The other child is the same age and lives in Southampton.
“At the time of her diagnosis in 2009, aged 4, she was the only survivor of four known others with the condition.
“I wanted to start up these exercise sessions to inspire and motivate the best out of people, through not just the physical knowledge I have, but the inspiration I can give through sharing precious life with my daughter as she would love to be able to walk and run.
“She is severely handicapped and has been my inspiration to help the people of Crewkerne to see that their healthy lives shouldn’t be taken for granted.
“The sessions are as much about improving your mental state as well as physical.
“I left the Marines after ten years, during my time in the forces I boxed and participated in triathlons at a high level.
“I found out I not just had a gift for exercise but to train others as well without the need for all that military shouting.
“I just love to train others. You can be 16 or 60 it doesn’t matter.”
Mr Hughes is married to Kelly and has another daughter, Molly. His bootcamp sessions run from 9.30am until 10.30am and incorporate a combination of exercises and games.
For further information, contact 07790 389681 or e-mail mhughesbox@hotmail.co.uk. Alternatively visit www.facebook.com/MarkOneFitness.
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