Chris Lynch from South Belfast has a rare genetic disease called Osteogenesis Imperfecta and is fundraising for a revolutionary wheelchair that could change his life.
This condition is often referred to as ‘Brittle Bone Disease’ and affects around one in 20,000 people worldwide. Its effects mean Chris has been confined to a wheelchair since he was six years old.
The 38-year-old filmmaker told Sync NI that the disease comes with a lot of restrictions: “I always have to be super-vigilant about risk every day as everything presents a danger. When I could walk as a small child, a simple fall to the ground would have guaranteed a broken leg and sometimes multiple fractures at once.
“Even now, the front casters of a wheelchair are small and rock solid. A small rut in the pavement could catch one of them resulting in being thrown out of the chair if I’m not careful.
“It means you’re always scanning the road ahead as such (and trying to avoid other nasties like dog poo!)”
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Chris only leaves his house for necessities but wants to be able to go out for enjoyment and live a relatively normal life.
He continued: “I can’t throw myself into wheelchair sports or other physical activities and I’ve just had to try and live life as best as I can.
“In my thirties however, my disability has had a direct impact on my mental health and for years I’ve suffered from depression. The distraction of partying in my twenties has disappeared as friends are now settled down with kids and the reality of my situation has impacted me significantly.”
Chronic fatigue syndrome comes as part of Chris’ condition, which leaves him often feeling lethargic. He said that “it really can create very down days when you don’t have the energy to get in the shower, let alone go out and about.”
The Omeo wheelchair was developed by Kevin Halsall in New Zealand for his friend that was paralysed after a car accident, but still wanted to partake in sports.
It has been tweaked over the past seven years and costs £15,000.
The system operates on two lithium ion batteries that take six hours to charge and will provide a range of approximately 26 miles. It can also charge a user’s mobile phone via a dedicated USB port.
It has an all-terrain kit for off-road adventures, allowing users to go across forest trails and sandy beaches, something which Chris said he has never been able to experience before.
People with varying disabilities can use the Omeo, including those with quadruple amputations who have previously had to use wheelchairs with a chin-operated joystick.
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“Similar to the recent advances in prosthetics for amputees and exoskeletons for paraplegics, the Omeo for wheelchair users is quite literally the closest thing I can get to walking,” Chris said.
“Being able to get an Omeo will transform my life on so many levels. One major thing that I can’t do is get a dog as walking it using my manual wheelchair would present too much of a risk and having the opportunity to get an assistance dog would be an amazing benefit both physically and mentally.”
Chris said that his goal is to be easily able to get out and do simple tasks that most people take for granted every day, such as “going to the shop near my apartment without having to use my car, going up to Portstewart and going for a stroll along the beach or even getting to follow my friends around a golf course; sure I can hold the beers!
“I live with hope and picture the good times ahead. The one thing I’m really committed to doing after reaching my target, is trying to help others who would benefit from the technology too.”
Chris is currently about £11,000 off his target. For more info on Chris' condition and to find out how to donate to his cause, click here.
