Samuel Gibson is so small he can't reach a kitchen bench unaided. Most of his bones have been fractured by a rare disease. Yet his life of adventure and creativity is a declaration that he is not disabled. "I live in a world where nothing fits. I am 3 feet tall and wheelchair reliant but am anything but disabled," says the 39-year-old. Samuel was born with a rare condition called osteogenesis imperfecta, a genetic disorder that makes for brittle bones that fracture easily. He says some with the disease do not survive beyond birth, others are largely unaffected. He estimates there are only a handful of New Zealanders with his type of the condition. There is no cure, although some surgical treatments are used to strengthen bones and some medications are being tried. Samuel recalls the constant, painful bone fractures of his childhood and teenage years, which are now less frequent. "One time I came off a motorbike as a teenage boy ... I broke my arm and all the ribs down one side and the femur and knee." Another time he was leaning forward across a seatbelt when his mother had to stop the car. "That was enough to break ribs, arms and both legs." But Samuel has never let his condition define him. "The label 'disabled' is a very negative word. To define someone as disabled, that's pretty tough, especially for a kid. I don't think anyone who knows me that well would suggest that word really fits." So how does Samuel define himself? Osteogenesis imperfecta • Incurable genetic disorder • Also called brittle bone disease • Causes fragile bones that break easily • Affects around five people per 100,000 births worldwide • Severity varies widely depending on genetic type • Can also cause muscle weakness, hearing loss, fatigue, curved bones and short stature • Surgery can be used to strength bones and some medications are being tried "You could say I am a regular guy, with a wife and two beautiful daughters, paying off a mortgage by doing an ordinary job," says Samuel, a contracts administrator from Hawkes Bay who is this morning giving a TEDxAuckland talk. But even that self-assessment under-rates Samuel's pursuit of excitement and challenge despite the greater-than-average risks he faces.
Some of us are drawn to pushing ourselves and having adventures more than others. I'm just one of those people and the fact I have brittle bones is a bit of an aside really.Last year he sailed solo across Cook Strait in a 3.6m-long dinghy, with several other yachtsmen. And in October, he plans to complete the 301km Alps to Ocean cycle trail from Mt Cook to Oamaru on an off-road wheelchair, with ultra-endurance athlete Lisa Tamati and two other runners. They aim to do it in five days. "I could easily break a rib on the first day and the rest of it is going to be pretty tough. We pump my tyres up as hard as we can and stiffen the suspension so you get more out of the batteries. Every little undulation gets transferred up into your body." Samuel says his determination and enthusiasm for adventure developed from growing up in a supportive, outdoors-oriented family in South Taranaki. As an adult, when he refused to accept the deficiencies of available wheelchairs, he teamed up with an engineer friend, Campbell Easton, and designed a better one. Now he has a machine that lowers him to the ground, where he can play with daughters Rosa, 6, and Isabelle, 4, and lifts him high to reach doors and windows. "I'm fully independent now." He owns patents for the wheelchair with Campbell, whose firm Metalform now makes them for distribution overseas by a Swedish company. Samuel says some call him "inspirational" but he finds this uncomfortable. "I'm just a guy getting on with it, just pretty lucky to be able to do these things. Some of us are drawn to pushing ourselves and having adventures more than others. I'm just one of those people and the fact I have brittle bones is a bit of an aside really."