The family of a South Australian boy who died in his father’s arms is desperate to secure the child’s brother a life-saving transplant and prevent him from the same, heartbreaking fate.
Hunter Fletcher lives with ornithine transcarbamylase deficiency (OTCD), a rare genetic disorder that results in the excessive accumulation of ammonia in the body.
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The surplus waste product that would usually be processed in the liver travels through the blood to the central nervous system and can result in vomiting, increasing lethargy, coma and death.
Hunter — whose family lives near Berri in South Australia’s Riverland, almost three hours from the state’s capital — is restricted to an extremely limited amount of protein and uses feeding tubes to deliver his meals.
The 11-month-old’s OTCD variant, “C.717G>T”, is so rare it is understood to be the only current case in the world.
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When his story was presented at a recent overseas conference, the hope was that other international specialists would be able to share their experience with similar cases.
Sadly, no other experts came forward.
Hunter, who celebrates his first birthday next week, is on the waiting list for a life-saving liver transplant, the only cure for his condition.
His mother Caitlyn Kourasanis told 7NEWS.com.au she was “anxious” waiting for the phone call that could change her boy’s life.
“It’s the not knowing. The phone could ring in the middle of the night. When I get a call from an unknown number, you wonder if it’s the one,” she said.
Hunter’s parents know how vital the procedure will be, having lost another child to the same condition two years ago.
Harvey took his last breath in his dad Peter’s arms at just three days old.
Australian donation rates have dropped to alarming levels and close to 1900 people are currently waiting for a life-saving transplant. Hunter’s mother encouraged Australians to register to become donors.
She is hopeful a match can be found before Christmas.
Hunter Fletcher was born with a rare genetic disorder. Credit: SuppliedHunter is on the waitlist for a life-saving liver transplant. Credit: Supplied
Hunter’s family will not return home for Christmas, instead staying at Ronald McDonald House in Adelaide, a service they have used on and off since he was born.
McHappy Day, the largest annual fundraiser used to support RMHC, will be held on Saturday, November 18, to support families like Hunter’s.
You can contribute by purchasing a Bic Mac, silly socks or helping hands at a local restaurant.
The fast-food giant will also be selling a limited-edition brick building set, with all profits going to RMHC.
McHappy Day has raised more than $60 million since being launched in 1991. Credit: Scott Ehler Photography
“McHappy Day is an event that captures the spirit of giving and we’re incredibly grateful to those who have already shown their support by generously donating to Ronald McDonald House Charities,” RMHC Australia chief executive Barbara Ryan said.
“For more than three decades, McHappy Day has raised over $61 million to help keep Australian families of seriously ill and injured children together in their time of need.
“We’re calling for everyone’s support as we lead into McHappy Day on Saturday, to help us to continue to help where and when it’s needed most.”
McDonald’s launched McHappy Day in Australia in 1991.
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