Samuel Gibson of Hawkes Bay has a congenital bone disorder, leaving him 1 metre tall and nearly all of his bones have been broken.
But he's also an adventurer, designer and inspiring speaker.
An adventurer with a rare brittle bone disease has died after suffering a devastating head injury while taking part in a half-marathon at the weekend.
Samuel Gibson, 39, was on life support in Hawke's Bay Hospital, Hastings.
Mr Gibson, who last week gave a TEDxAuckland talk, was born with a rare condition called osteogenesis imperfecta, a genetic disorder that makes for brittle bones that fracture easily.
He was taking part in the Sotheby's half marathon in Hawke's Bay when he suffered a fall from his wheelchair.
Mr Gibson's brother Matthew has posted a statement about his death on Facebook.
"It's with heavy hearts and great sadness that we share with you Samuel's passing earlier this morning," the statement says.
"The family would like to publicly thank the ED and ICU teams at Hawke's Bay Hospital who were so kind in their care for Samuel. Unfortunately the injuries that Samuel sustained were not survivable.
"The family would also like to thank the many people who have been providing support for Jen, Rosa, Isabelle and his immediate family.
"Thank you also for the many kind messages of support that have been received. Samuel will be greatly missed by so many people, he touched so many lives and was an inspiration to us all.
"We will let you know of Sam's funeral arrangements in due course."
Several people have described Mr Gibson as "brave" and "inspiring" in tributes to him on social media.
"Oh no! RIP Samuel Gibson, died doing what he loved and inspiring others by not giving in to his difficulties. God's peace be with with the family as they go through losing you," a Facebook user said.
Very sad to hear about Samuel Gibson. He was a real inspiration to all the mentors and mentees on Project K. Thoughts to his family.
"Thoughts and prayers to your family and friends during this difficult time," a friend said.
Yesterday, a Facebook post by a family member said: "Dear family and friends, we are sorry to share with you that Samuel suffered a devastating head injury yesterday while competing in a half marathon.
Messages of support had flooded on to Mr Gibson's Facebook page yesterday.
"Know that we are all praying for you Sam. Recover and come back stronger to tell us your story. Kia Kaha," Bernadette Smith said.
Mr Gibson's life of adventure and creativity was a declaration to the world that he was not disabled.
"I live in a world where nothing fits. I am three feet tall and wheelchair reliant but am anything but disabled," he told the Herald earlier this month.
Some of those with osteogenesis imperfecta do not survive beyond birth, but others are largely unaffected. There is no cure, although some surgical treatments are used to strengthen bones and some medications are being tried.
Samuel Gibson told the Herald earlier this month: "You could say I am a regular guy, with a wife and two beautiful daughters, paying off a mortgage by doing an ordinary job."
in a wide-ranging interview with the Herald, Mr Gibson recalled 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 seat belt when his mother had to stop the car. "That was enough to break ribs, arms and both legs."
But he 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," he said.
"You could say I am a regular guy, with a wife and two beautiful daughters, paying off a mortgage by doing an ordinary job.
"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 was planning 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.
Mr Gibson said 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. He had a machine that lowered him to the ground, where he could play with daughters Rosa, 6, and Isabelle, 4, and lifted him high to reach doors and windows.
OsteoHealth NZ owner Cath King considered Mr Gibson a "very inspiring person".
"I've seen how devastated people are when they have any kind of osteo diagnosis but then to look at Samuel and everything he did with his life, they can see that it need not define who they are."
Ms King is planning to post a tribute to Mr Gibson in the clinic's newsletter.
"I'd like to put a lovely message in which pays respect to him and shows our members the kind of life they can lead."
Meanwhile, Mr Gibson's running mate and friend Lisa Tamati has posted a heartfelt tribute on social media.
"We are lost for words and mourning the loss of our dear friend and wonderful human being Samuel Peter Gibson," she posted.
