Travel costs could scupper Tokyo Marathon dream

A father of a severely disabled daughter who have together raised about £100,000 for charities through hundreds of races, has said the cost of reaching the Tokyo Marathon is likely to stop them taking part.

Chloe Couture, 19, from Atherstone in Warwickshire, has Cerebral Palsy, severe visual impairments and other major health issues.

Her father Stephan pushes her in a custom-built wheelchair around race routes and was hoping to do the same in Japan on 1 March after being offered a place by charity MS-UK.

However, he said the lowest cost of flights had been quoted at £18,000, before accommodation and other bills.

Stephan said due to his daughter's complex needs and the space needed to care for her, the pair needed to fly Business Class and one airline had even quoted £42,000 for their tickets.

He added the family had already raised £4,000 in sponsorship for MS-UK for the Tokyo race, but did not like to crowdfund towards the cost of travel as that was cash that could go direct to charity.

The 61-year-old said: "We have to carry all of Chloe's needs, we have to change her on the aircraft because Chloe can't use the toilets.

"Chloe can sit up to take off and... land, but then for a long-haul flight, because it's over 13 hours, she needs to lie down, which helps her with her muscles and everything else."

Stephan and his wife Diane adopted Chloe at the age of four-and-a-half, having responded to an advert in the Church Times.

"We thought, yes we could give a child a home," he said.

Stephan said Chloe needed round-the-clock care and that brief breaks were even required during races to give Chloe snacks or administer medication.

The couple both have backgrounds in special needs - Stephan had been a teacher and his wife had cared for someone with intense needs earlier in her career.

"Not that it's been easy," Stephan said. "We still need to battle for her every day. And it's got worse since she became an adult.

"But we'll fight tooth and nail for her."

Despite Chloe's limitations, he said she was "amazing" and "loved life".

"She's severely disabled, but we try to lead a normal life wherever we can.

"And we take her out everywhere possible to lead an active life."

When Chloe joined the family at the age of four-and-a-half Stephan said she did not communicate beyond one Makaton sign.

However, a trip to a cafe at a garden centre soon after she moved in would open the couple's eyes and ultimately lead to Chloe's globetrotting.

"A little arm came up at the till as you put your tray on to pay and there's a bar. She grabbed it and pulled herself [along] about four inches. And that was it.

"There was a look in her face. It was the first ever movement by herself."

They continued to encourage her to pull herself along in her buggy for the next three hours, confident that they had "woken something in her".

Stephan and Chloe started racing together soon afterwards, in 2010.

Since then, the pair have gone on to take part in marathons, 10K races and even triathlons in locations across Europe and further afield - including racing across a frozen lake in Norway at -16C.

"Just because you're disabled, it doesn't mean the world should be closed off to you," her father said.

Chloe's 18th birthday was spent at the Manchester Marathon and the family will mark her 20th in April competing in Paris.

She continues to love taking part, Stephan said, adding that "she is full of beans, big smiles" during races.

"When we came over the finish line in Berlin everyone cheered. She couldn't see them, but she could hear them," he said.

A flight to Bermuda for a triathlon competition was covered by corporate sponsorship, Stephan said, with the family self-funding travel to most other events.

The Duo Teams race at the marathon in Tokyo is supposed to be one of the pair's fundraising commitments for the charity MS-UK, and they had taken part in a trial event last year, but Stephan said he did not feel comfortable asking for donations to pay for their travel costs.

"When we're raising funds for charities, it's awfully hard sometimes, so we try to self-fund. I feel personally, it's like I'm taking money away from people that could be going to charities," he said.

The family have approached several airlines explaining their situation in the hope that one of them can help.

In a statement, ANA Airways, the Japanese national airline, said: "While we truly admire their commitment, we receive a high volume of requests of this nature and, regrettably, we are unable to support all of them."

Stephan said he had received a similar response from British Airways and was trying to do whatever he could to get them to Tokyo.

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