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Northern Ireland man with rare genetic disorder fundraises for wheelchair to visit Portstewart Strand for the first time

Belfast filmmaker Chris Lynch has never been to the beach or a forest — a rare genetic disorder prevents him from such seemingly simple pleasures. He tells Stephanie Bell about his fundraising campaign for a new wheelchair

Funding appeal: Chris Lynch hopes to raise enough money to buy an Omeo wheelchair
Funding appeal: Chris Lynch hopes to raise enough money to buy an Omeo wheelchair
Funding appeal: Chris Lynch hopes to raise enough money to buy an Omeo wheelchair
An Omeo wheelchair

By Stephanie Bell

It is the simplest of everyday tasks like carrying a cup of coffee, talking on the phone while on the move or even looking around you as you walk down the street which a Belfast man lives in hope of one day being able to enjoy.

However, Chris Lynch (38) has a devastating rare genetic condition which makes his bones break easily.

He has had more than 100 fractures, half of which have occurred in his leg which is now so weak that Chris is at risk of losing part of it.

Simply moving his wheelchair over a rut in the pavement is all it takes to leave him with a painful fracture.

When moving from one place to another, he has to constantly have his eyes down scanning the ground for even the smallest obstacle.

But now, for the first time in his life, Chris has the hope of transforming the quality of his life for the better thanks to the development in New Zealand of a new hi-tech hands-free wheelchair.

The new Omeo chair, which uses Segway technology to produce its hands-free operation, has no front wheels which pose such a hazard to Chris. And its large tyres allow it to move over rough terrain.

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For Chris, who has never been to a beach and has to avoid grassy areas, it would open up a whole new world to him.

However, at a cost of £15,000, he has had no choice but to set up an appeal which he hopes will help raise the money to fund it.

He says: “It would completely transform the way I live.

“I always have to be extremely cautious about activities I engage in and always have the fear of something happening.

“Normal wheelchairs present a risk when using them outside due to the small casters at the front.

“You always have to watch the ground to ensure that they don’t get caught in a rut or pothole, so for me just being able to look around me as I go down the street would be a new pleasure,” he explains. “Going across grass and other terrain is extremely difficult and even going to the shops is impossible because I can’t carry shopping back as I need to use my hands to propel myself.

“When taking shopping up from my car to my apartment, I have to hang bags from my teeth as again I need to propel myself.

“I would love an assistance dog which would benefit me greatly but even that is out of the question as it would be too risky if it pulled me on the manual chair.

“The way I am now, if I were to break another upper or lower limb, I wouldn’t be able to use the chair at all and would either be bedridden or hospitalised until I recovered.”

Chris has a rare genetic disorder known as osteogenesis imperfecta (OI) which affects just one in around 10,000 people.

It is a soft tissue connective disorder that is most commonly known for its main symptom of extremely brittle bones.

He has been using a wheelchair since he was six-years-old and as the condition progressively worsens with age, he has had to contend with more complications to his health.

The wide-reaching impact on his general health has caused partial deafness, chronic fatigue syndrome, severe scoliosis and, in recent years, osteoporosis which puts his bones at even greater risk of breaking.

Despite the many and complex challenges he faces every day, Chris has managed to live an independent life in his own apartment and runs his own business, Brands Enable, filming videos for companies for use online.

The unpredictable nature of his condition has meant that he cannot hold down a full-time job and has had to be self-employed for most of his life.

Every week he has at least one day when he is unable to work due to chronic fatigue.

And, as a generally upbeat person who enjoys life, the limitations he faces have unsurprisingly impacted on his mental health in recent years.

He says: “The nature of my disability means it would be impossible for me to have a full-time job and one of the challenges I have is trying to manage my business.

“I have to work around my health and I don’t know from one day to the next how things will pan out so I’ve just tried to carve my own path as much as possible.

“Some days, not only can I not make it into work but I might not make it to the shower until 6pm because I am feeling so bad.

“When your energy levels aren’t great and you’re not able to do things, it impacts on your mental health and I have battled depression because of it in the last few years.

“A massive distraction is being able to socialise with friends but now because of the gravity of my disability I can’t even do that.

“My physical health is poor and I’ve now reached the point where I’ve broken bones in my leg so many times that the leg is so fragile — and I’ve been told if I get another fracture, there is a chance I might lose my lower limb.

“I have been in a wheelchair since I was six. Before that if I had fallen in the playground at school I would have broken my leg and even crawling as a baby I could have had several fractures just by rolling over.

“At any one time I could have several fractures in my body although lately it has just been ribs and bits and pieces.”

The new wheelchair which Chris is fundraising to buy was developed in New Zealand just two years ago.

Its unique ability to propel itself and its extra large tyres would considerably reduce the risk to Chris of bone fractures.

He has no doubt it would change his life.

“To me it would be the closest thing to being able to walk,” he says. “It is the biggest breakthrough in wheelchair technology since the development of the wheelchair itself.

“It is a game changer. It would allow me to go to places I’ve never been before like the beach or a forest trail or even to a golf course to watch my friends play.

“My dad retired a few years ago and loves his golf and I’ve never been on a golf course. Just being able to go and watch him play or my friends play would be amazing.

“I’ve never been on Portstewart Strand and that’s something I would love to do.

“It will give me a new level of independence as, given that it operates hands free, it will allow me to carry my shopping independently so I can go to my local shop if I need to.

“Simple things that most people don’t even think about like being able to drink coffee or eat on the go, taking a dog for a walk would all be possible.

“I would even be able to take my own rubbish out which I currently have to rely on others to do for me.

“It will allow me to explore more, get out into the outdoors more, socialise and develop new opportunities as I develop my career as a filmmaker.”

The Omeo specification really is quite special.

It is a powerful two-wheeled chair specially designed with a self-balancing platform allowing users to travel over uneven terrain, scale inclines and navigate troughs while always remaining level in the seat.

The electrically operated chair can cover up to 30 miles with one charge and can travel at 12mph.

Chris has set up a crowdfunder appeal and in just three weeks has raised £4,000 of his £15,000 target, thanks to a large donation from the Film and Television Charity.

Friends have also organised fundraising events but if Chris wants to take delivery of the new chair this year he is facing a November 10 deadline this weekend for ordering it.

He says: “The length of time it takes to make one as they are newly in production means that it can take months to get it.

“I have a chance for one that is available now but I know it’s a tight deadline. As I try and develop my career now as a filmmaker, the chair will also provide me with a huge opportunity to secure work that I previously haven’t been able to, as it will allow me to move and carry my camera at the same time.

“Any money that I receive beyond my target will be donated to The Brittle Bone Society who have been amazing in helping me with so many wheelchairs in the past.”

Chris is very aware that people are feeling the pinch and while he is depending on the generosity of strangers to help him secure the chair, he plans to continue fundraising to help others.

He adds: “There are so many good causes out there and I know it is not possible to support everything.

“I think if people would even share my crowdfunder link with others who are in a position to help me realise my dream in getting this, it would be truly appreciated.

“I really want to generate awareness of the huge impact this new technology can have on others and when I get my chair I want to help raise funds for other people to access one too.

“From what I understand, other people with a vast array of disabilities are benefiting from it.”

You can support Chris at www.crowdfunder.co.uk/segway-wheelchair-fundraiser

Symptoms of rare genetic condition

Osteogenesis imperfecta (OI) can be described as mild, moderate or severe. Some people with OI have hardly any symptoms, but others can experience physical disability.

Symptoms can include:

Ligaments stretch more easily

Joint hypermobility which can result in fatigue of many muscle groups

Hearing loss

Fatigue

Joint laxity

Curved bones

Scoliosis

Blue sclerae (due to thinning of the white outer layer of the eyeball)

Dentinogenesis imperfecta (brittle teeth)

Short stature

Although there is no cure for OI, symptoms can be managed and treatments for OI may include:

Care for broken bones

Care for brittle teeth

Pain medication

Physical therapy

Use of wheelchairs, braces and other aids

Surgery, such as rodding

Bisphosphonates — these are drugs which are mostly used in children with OI to improve bone density. Positive effects have been seen less often in adults.

Source: Brittle Bone Society

For more information, visit www.brittlebone.org

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