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Teenager from Tonbridge takes on 30km in 30 days in specialist wheelchair for charity Freedom for Wheels

A disabled teenager whose mobility took a turn for the worst when lockdown hit is using his time in isolation to raise funds for the charity that got him moving again.

Wheelchair user Owen West, from Tonbridge hopes to complete 4,080 laps of his living room, the equivalent of 30km, throughout November for Freedom for Wheels.

Owen West from Tonbridge is taking on 30km in 30 days challenge for Freedom for Wheels
Owen West from Tonbridge is taking on 30km in 30 days challenge for Freedom for Wheels

In 2017, at the age of 15, Owen was diagnosed with type-three Loeys-Dietz syndrome and the extremely rare CDK13.

It means he has limited mobility and can go from being perfectly fine, to feeling excruciating pain with the flip of a switch.

The 17-year-old Nexus pupil usually has specialist physio sessions at school to help manage his pain.

But when the pandemic hit, and Owen had to shield in March, the sessions stopped and his movement deteriorated which in turn increased his pain.

Owen's mother Shelley West said: "He was so active prior to lockdown and he loved playing wheelchair basketball and overnight everything stopped.

Owen raced alongside paralympian David Weir at Superhero Series Winterwonderwheelz in 2018
Owen raced alongside paralympian David Weir at Superhero Series Winterwonderwheelz in 2018

"It was nobody's fault, just one of the downsides of Covid-19 but physio has been part of his daily routine ever since I can remember, for that to stop was a real challenge.

"Where he had become so immobile, when we were eventually able to leave the house again, his pain had increased and he really struggled."

After hearing Owen's story, Freedom for Wheels, a charity which helps wheelchair users in Kent access vital services, stepped in to fund virtual sessions which he now has once a week.

Ms West added: "It was a huge weight off my mind because we had gone months with nothing.

"Now that we're shielding again, to know that his movement won't suffer is a relief."

Owen with mum Shelley at a fun run in Mote Park in 2018. Picture: Andy Jones.
Owen with mum Shelley at a fun run in Mote Park in 2018. Picture: Andy Jones.

To say thank you, Owen set himself the physical challenge to raise money for the charity so other wheelchair users can benefit from the same support.

Now five days into his 30km journey, Owen is well on his way to reaching his £150 target.

He is doing this alongside the Superhero Series, an organisation which runs sporting events each year for people with disabilities.

Owen is just one of 147 young people across the world with the rare condition CDK13.

Three years ago, he woke up unable to move just two months after being told by doctors he was suffering from the severe genetic condition affecting his spine and joints.

The family knew it would eventually impact his movement but the paralysis came sooner than they expected.

At the time, Freedom for Wheels provided a lifeline giving Owen a specialist wheelchair to help him regain independence.

Despite relying on a wheelchair, Owen has continued to maintain an active lifestyle and has taken part in several fundraisers.

He also shoots hoops for the Folkestone Arrows, something made possible thanks to the charity's support.

He has won more than 100 medals from events he has competed in and even raced alongside paralympians David Weir and Dimitri Coutya in the previous Superhero Series events.

Freedom for Wheels hopes to use the money to open a rehab centre for those needing extra care because of this pandemic.

The charity was set up by Luisa Pearce from Staplehurst who was told she would never walk again after minor surgery to her wrist in 2014.

In 2016 she raised more than £50,000 to set up the charity after taking on the Guinness World Record attempt for the fastest crossing of 100km of the Sahara Desert in a wheelchair.

To help Owen in his fundraising mission click here.

Read more: All the latest news from Tonbridge

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