SA mom’s story on why she wants all disabled kids to share in life’s adventures
When she saw her son, a quadriplegic, enjoy activities most kids like him can’t because of their physical limitations, Deirdré Gower felt compelled to do something about it.
Damian. (Photo: Supplied)
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When she saw her son, a quadriplegic, enjoy activities most kids like him can’t because of their physical limitations, Deirdré Gower felt compelled to do something about it.

After a routine measles vaccination at nine months went horribly wrong, Damian (now 20) suffered a loss of mobility and was left with limited speech.

But that never stopped Deirdré from giving her son the full experience of life.

At age two he got his first pony and soon rode in his first show, he later joined his mom on hikes, fun walks and would sit in a seat on Deirdré’s bicycle.

“I had a dream to start an organisation that supported and encouraged other children with disabilities and their families to share in these adventures with us,” she says.

Four years later her dream has grown into an organisation that aims to uplift and empower kids with disabilities by providing “special adventures tailored for special kids”.

Warriors on Wheels has since impacted 100 families, offering their differently-abled kids the opportunity to participate in running and cycling events – like the Cape Town Cycle Tour – boat cruises and even paragliding.

“To see children with disabilities experiencing adventures they otherwise wouldn’t have tried and to see them loving it, is the reason we do it,” Deirdré tells YOU.

Damian

The non-profit organisation relies on sponsorships and volunteers to host the events. 

For Deirdré, it’s a fulfilling job like no other.

“They display so much courage and have experienced more than a lot of able-bodied people,” she says. “It’s a reminder to not take our abilities and opportunities for granted.”

Damian was born a healthy baby in November 1998 and reached all his development milestones at appropriate times.

But he had a severe reaction to the measles vaccination and contracted the viral infection. His temperature soared and he had a high-pitched, uncontrolled scream.

“It was soon after this that we noticed the first signs of regression,” she says.

“He was hunching over while sitting and needing to hold onto his legs to remain sitting. He lost his balance while standing up, holding onto furniture and falling over – all things he had no trouble with before.”

It was then that Deirdré, a single mother and living in East London at the time, realised something really was amiss.

“We didn’t initially make the connection to the vaccine,” she recalls. “The loss of his mobility wasn’t immediate, it took time. It started with his lower body and then progressed to his upper body.”

Tests were done and shortly after Damian’s first birthday a paediatrician suggested he had adrenoleukodystrophy (ALD), a disease that results in seizures and hyperactivity.

Damian

Deirdré was told her son wouldn’t live past the age of three.

“In my frantic internet searching to find a cure, I contacted specialists of this condition in Baltimore, Maryland in the USA. They had me send blood samples over and they ruled out ALD.”

Years of testing for other disorders began, which all turned up negative and eventually Damian became labelled with cerebral palsy, although doctors could never quite pinpoint what the cause of his condition was.

But Deirdré has opted to shift her focus to showering her son with love. Witnessing his regression was tough on her, which is why every day she has with Damian is precious.

“I can’t describe the anguish of this and the hours of crying into the early hours once he’d gone to sleep at night, desperate prayers and pleading for his life and the feeling of helplessness.”

For Damian’s 13th birthday she wrote a book entitled Warrior on Wheels as a gift to him. Deirdré wanted to teach her son about his journey in way he could identify with the character, especially as he was going through his teenage years.

“It wasn’t initially intended to be published, but after a few people read and enjoyed it I decided to self-publish. It was later produced for theatre with the magical use of puppetry, which also went to the Grahamstown Arts Festival,” she says.

“That was a highlight, to see it brought to life on stage in a remarkable adaptation by producers who each gave it their own unique interpretation.”

In 2013, three years after relocating to Cape Town, Deirdré tackled the 109km Cycle Tour, backed by The Chaeli Campaign, with Damian in a buggy attached to her bike.

But by 2015 Damian had become too heavy for Deirdré’s petite frame and a volunteer, Wolf Stinnes, pulled him during the 2015 and 2016 cycle tours.

Damian


In 2016 three other volunteers came on board too and completed the tour with three more children. Warriors on Wheels has since branched out to other adventure activities with 100 children participating and Deirdré wants to see the foundation expand beyond the Western Cape.

“I’ve always wanted it to grow to other areas across South Africa so that children all over the country can enjoy the wonderful adventures and experiences that are available,” she says.

“We had the first three teams participating in the Knysna Cycle Tour this year, our first excursion out of Cape Town, and so I feel we’re at the start of expanding our services and impacting more families.”

Damian has an adventurous spirit and an incredibly positive attitude, his mom says.

“He is resilient – laughing his way through some of the toughest of times. People often ask if he’s always so happy.”

Damian is a tech-obsessed young man and dreams of becoming a DJ, she adds.

“He’s thrilled if he has a tablet or laptop and access to music.”

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