How Quentin Kenihan defied osteogenesis imperfecta to live an extraordinary life
Quentin Kenihan, who died at the age of 43, has been remembered for his determination. (Instagram)
When the late Quentin Kenihan was born, he had eight broken bones, including both his arms and legs, as well as several ribs.
- Quentin Kenihan helped focus public attention on osteogenesis imperfecta
- Also known as brittle bone disease, it is a genetic condition that comes in different types
- Funeral arrangements for Kenihan are currently being determined
He was born with osteogenesis imperfecta (OI) which is believed to impact about one person in every 15,000.
In his 2016 memoir Not All Superheroes Wear Capes, Kenihan joked that the term “osteogenesis imperfecta” sounded like a Harry Potter spell.
But the reality was, as he acknowledged, very different.
“Some patients can have just a few fractures in a lifetime and lead normal lives. That wasn’t my lot,” he wrote.
“My parents were told it would be extremely unlikely I would ever walk as my fragile legs would break under the stress of bearing my weight.
“I was not meant to live beyond my first day. I had so many rib fractures, which the doctor told my parents couldn’t be treated or immobilised, and one or several could pierce a vital organ.
“My bones are not chalky nor do I have a calcium deficiency. My bones are brittle. They just break, like eggshells.”
Despite the challenges, Kenihan — who died at the age of 43 — became a highly recognisable and accomplished actor, writer, entertainer and disability advocate.
Along with the late Stella Young, who died in 2014, Kenihan was one of Australia’s most recognisable public figures with OI, and helped to break down stigmas surrounding the condition.
While much is already known about the disorder, research into its nature and causes is ongoing.
What is osteogenesis imperfecta?
Kenihan achieved prominence from a young age after being featured on television with his family. (Supplied)
Commonly known as brittle bone disease, OI is a genetic condition.
Its name means “imperfect bone formation” and the condition results in bones that break easily.
Kenihan sustained more than 600 fractures during his lifetime.
According to the Osteogenesis Imperfecta Society of Australia, there are five main types of the disease, which are classified according to severity.
Its effects can include shortness of stature, bone deformity, underdevelopment of lungs, restricted breathing, loss of hearing and weakness in the muscles.
“Children born with more severe types of OI can often sustain fractures in the womb or during childbirth,” the society stated on its website.
“The most severe cases of OI can result in infant death, often due to respiratory failure during or shortly after birth.
“No two people display exactly the same characteristics of OI, even within the established types.”
What causes the condition?
Disability activist, writer and comedian Stella Young had osteogenesis imperfecta. (AAP: Suppled)
Brittle bone disease arises from a mutation in one of the two genes that produce collagen, which is the most common protein in the human body.
Collagen is a vital ingredient in human bones, and helps give them their strength.
“[It] can be likened to the framework around which a building is constructed,” the society states.
“In OI, a person has either less collagen than normal, or a poorer quality of collagen than normal, leading to weak bones that fracture easily.
“Seventeen genetic causes have been identified and research continues.”
The disease may be passed on by one or both parents, who can possess the genetic defect without displaying the symptoms. But it can also arise from a new mutation.
How does it impact everyday life?
The mildest forms of OI may go undiagnosed.
However, people with the more severe types are impacted in fundamental ways.
In Kenihan’s case, he got around using a customised mobility scooter and also needed an oxygen supply.
“I don’t think everyone realises how much he relied on the oxygen [supply] and he was able to do so many things because of it,” his carer of 12 years Ian Kissock told the ABC.
Notwithstanding the tremendous challenges, Kenihan was determined to live life to its fullest.
He achieved prominence at a young age after being featured in interviews and a documentary by journalist Mike Willesee.
On Sunday, Willesee said he was “absolutely devastated” by the news.
“He was such a tough little bugger who always defied the odds. The respect I had for him was enormous,” he said.
“I will always have a very special place in my heart for Quentin.”
He was a common presence around Adelaide, especially at the Central Market, and was often accompanied by his little dog Patchy.
“Miles, [Quentin’s] brother, is looking after Patchy but we can’t tell her what’s gone on,” Mr Kissock said.
How will he be farewelled?
Mr Kissock said funeral arrangements were still being worked out.
“The family are waiting for his mum to come home and they’ll sit down and talk about it,” he said.
“His mother’s flying back from Europe and they’re waiting on an autopsy to find out what it actually was that took his life.”
Kenihan established many friendships over the course of his life.
Savage Garden singer Darren Hayes first met Kenihan in 1997. It was Hayes who was star-struck, having grown up watching Kenihan’s appearances on television.
They last talked six months ago, and Hayes spoke warmly of his friend, whom Hayes conceded “had a huge ego” and was a “name-dropper”.
“We always just spoke like friends and artists,” he told ABC Radio Adelaide.
“I shared similar challenges to him in terms of the ups and downs of fame and career.
“He could be annoying, he could be a pest… he found a way to just get under people’s skins and get to their hearts.
“He was a charming bastard… he was so charming and disarming and real — a real sweetheart.
“He had such a wonderful life and touched so many people, he was a really cool dude.”
Tributes are continuing on social media — including ones from celebrities, politicians and friends — a domain in which Kenihan was very active.