A 19-year-old with severe disabilities refuses to be beaten by his condition.
Owen West, from Staplehurst, is an avid sportsman, although he suffers from a spinal condition which has placed him in a wheelchair.
He already plays for a wheelchair basketball team in Folkestone – the Folkestone Arrows – and for a wheelchair rugby team in Canterbury – the Canterbury Hellfires.
Now he has undertaken one of his greatest challenges. He leads a team of 60 participants from across the country who compete in the Super Heroes Virtual Summer Challenge.
Everyone involved has some form of disability. Their challenge is to collectively cover the equivalent of the circumference of the world – more than 46,000 km – in the best possible way, whether in a wheelchair or with a walker.
They have until August 20 to complete the task, and each participant logs the distance they have personally covered daily.
Owen leads the team of Captain America, one of four participants, and he has chosen as his superhero sidekick, his pet cat, Oriel, who walks the distance with him sitting on his lap.
His mother, Shelley West, said: “Owen is on the streets, doing his distance every day. He is very visible as he wears his Captain America costume and has red, white and blue flashing lights on his wheelchair. “
Owen has a backup plan for days when it’s too hot or – maybe one day – too humid to go outside.
Ms West said: ‘He calculated that 136 laps of our living room equaled 1 km!’
Owen was just 15 when doctors discovered he had not one but three rare genetic conditions: he has Loeys-Dietz syndrome type 3, KBG syndrome and CDK13.
At the time, he was one of only 12 people worldwide diagnosed with CDK13, although that figure has now risen to 229. KBG syndrome is even rarer, with fewer than 100 cases worldwide. Loeys-Dietz syndrome is more common, but remains rare. There are around 334 cases in the UK, or less than one in 201,000 people.
As a result, he is unable to walk, has learning difficulties, loses his sight and is often in pain.
But Ms West said: ‘He never complains and never takes a beating.
He has just completed his education at Nexus Special School in Tonbridge and has secured a place on an assisted learning course at Canterbury College, where he will remain until he is 25.
He participates in the Superhero Challenge to collect finds for two charities – Whizz-Kidz and Freedom for Wheels – both of which have supported him through his struggles.
Freedom for Wheels gave Owen a life-changing wheelchair and funded his physiotherapy during the lockdown.
Whiz Kidz gave Owen a set of all-terrain wheels and a freewheel accessory that turns his day chair into an all-terrain chair. They also offered work experience and job skills classes online and in person.
Ms West said: “Owen enjoys helping others. He recently took part in a speech therapy project with the Melbourne Institute in Australia which will be used to help people with language difficulties.”
So far, Owen has covered 45km and his team has collectively covered 31,513km.
He was suggested to participate by his social worker and Owen uses Twitter and Instagram to send daily messages of encouragement to his teammates.
Owen said, “I just want to help people like me. Do what I can.”
Owen said: “People are nice. Yesterday I was at Staplehurst and a man ran up to me and emptied his pockets of all his money to donate to the cause, saying I was doing a great job. made me feel very happy!”
If you want to help Owen with his fundraising, he has two GoFundMe pages, one for Whizz-Kidz here and one for Freedom for Wheels here.
And Owen has one more challenge in his diary.
On August 20, he will travel to Dorney Lake in Windsor to compete in a superhero triathlon where he will be partnered with Paralympian gold medalist Anne Usher.