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SIMON O’CONNOR / Things
New Plymouth man Steven Barnes, 31, died after his rare inherited condition turned cancerous.
Twenty-six years after they lost their daughter at Christmas to complications from a rare genetic condition, a Taranaki family mourns the loss of their son to the same disorder.
Steven Barnes, 31, died on December 31 after his inherited condition turned cancerous and was fired on Wednesday.
The New Plymouth man’s death occurred on the anniversary of his sister Melissa’s funeral in 1994.
His death, at the age of 10, is believed to have resulted from complications from surgery for the same condition, called familial adenomatous polyposis.
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The disorder sees numerous precancerous polyps (small clusters of cells) that regularly develop in the large intestine, resulting in constant checks and removals.
Melissa and Steven, and their surviving brother Matthew, inherited the condition from their father, Errol.
SIMON O’CONNOR / Things
Errol Barnes didn’t expect to pass on his rare condition when he had children with Suzy, but he did. Pictured with Steven and his surviving son, Matthew.
Steven’s condition became terminal in February of last year when he was diagnosed with cancer of the intestine, liver, and lymph nodes.
“He kept his attitude positive until the last day,” Errol said. “And he was hoping, hoping for the best.”
Steven is remembered for his positive attitude, generosity, and big smile, which his family says he maintained throughout their battle.
When he shared his story with Stuff in September of last year he had planned to make the most of the time he had left.
“At the end of the day, everyone is going to die. We have our own paths to walk, ”Steven said. “If I wasn’t who I am, the whole world would have been broken long ago.”
Before having children, Errol and his wife, Suzy, were told there was a 1 in 10 chance of transmitting the disease, but all of their children were diagnosed at a young age.
Because Errol was diagnosed as a child, he made sure his children got regular checkups and the surgeries they needed, but sadly this was not enough.
Before he died, Steven wanted to travel the country with his family, but they were only able to reach Rotorua in September, with stops at Hobbiton and Waitomo Caves.
Steven started to go downhill and pain started to appear, Errol said.
“I think that could have been the beginning of the end.”
They discovered that a tumor had blocked his intestine and surgery to try to correct it was unsuccessful.
Steven spent the last 10 weeks of his life in the hospital and at Taranaki Hospice, but came home for a big party on his 31st birthday in December and at Christmas.
“We want to thank everyone who helped make his last days as happy as possible,” said Errol.
SIMON O’CONNOR / Things
Steven is remembered for his positive attitude, smile, and generosity.
Steven had loved working at Pak ‘n Save New Plymouth for 12 years, he added, and one of his last requests was to see the store manager, Peter Melody, and his wife, Deb.
Peter Melody said that the news of Steven’s death had been a sad start to the year and that he would be missed.
“He was very, very popular with staff and customers.”
The family is trying to prepare for the future, but they know that the next few months, and every Christmas, will be difficult.
“It’s going to be difficult,” Errol said.
When Steven was in the hospital and hospice, he would smile at anyone passing by and worry about everyone else before himself, his father said.
Brother Matthew agreed.
“You could tell he was a fighter.”
