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The family of a toddler battling a rare disease who saw his older brother die in his father’s arms at just three days old desperately need a life-saving transplant to save him from the same fate sinister.
Hunter Fletcher, who turns one next week, is in urgent need of a liver transplant after being diagnosed with the same rare genetic disease as his late brother Harvey.
The 11-month-old boy suffers from OTCD (ornithine transcarbamylase deficiency), a disorder that causes excess ammonia to build up in the body.
Hunter’s father Peter told Daily Mail Australia his son was doing well given the circumstances, but they were having difficulty finding a donor.
“He needs continued, constant care while we wait for a liver,” he said.
“No one has contacted us for a liver.”
Hunter Fletcher, who turns one next week, is in urgent need of a liver transplant after being diagnosed with the same rare genetic disease as his late brother Harvey. He is pictured with his father Peter, his mother Caitlyn and his older brother Harrison.
Hunter Fletcher, who turns one next week, is in urgent need of a liver transplant after being diagnosed with the same rare genetic disease as his late brother Harvey.
Ammonia is a type of waste that is usually processed by the liver, but if it builds up, it can affect a person’s central nervous system. High levels of toxic chemicals can cause unconsciousness and even death.
The family, who live in Berri, north-east of Adelaide, can only give Hunter small amounts of protein and give him meals through a feeding tube.
Mr Fletcher said he called to donate his son his liver and even stopped drinking so he could go through the procedure.
“I wanted to be the donor and I stayed sober for 6 (sic) months but found out I didn’t have the right blood type,” Mr Fletcher said.
Hunter who was diagnosed with C.C717G>T – a very rare variant of OTCD that his specialists had never seen before.
“His case is the only variant they have ever seen so far,” his father said.
“It’s very rare… Doctors see maybe 1 to 2 (sic) cases per year.”
Mr Fletcher (pictured centre) said doctors had never seen a case like Hunter’s (pictured left with his wife Caitlyn) and said his son’s condition was one of the rare forms of OTCD that currently exists (photo right, Harrison, Mr. Fletcher’s eldest son.
Hunter’s mother, Caitlyn Kourasanis, said 7 News she hopes the family will find the right donor to give her son a chance at life.
“It’s the fact of not knowing. The phone might ring in the middle of the night. When I get a call from an unknown number, you wonder if it’s the one,” Ms Kourasanis said.
She says she hopes a donor can be found before Christmas.
The family lost their son Harvey in similar circumstances when he died in Peter’s arms, aged just three days, following a devastating illness two years ago.
Liver transplants from deceased donors are the second largest type of organ transplant required, according to the latest government figures.
The family hopes they can find the right donor for Hunter (pictured) before Christmas, as the family spends the festive period at the Ronald McDonald House in Adelaide.
There was a 3% increase in liver transplants between 2021 and 2022, but in South Australia the number of deceased organ donors who could have provided liver transplants decreased from 29 to 20 over the same period .
The Fletcher family will spend Christmas at the Ronald McDonald House (RMMO) in Adelaide, a community service they have used since Hunter was born.
RMHC provides services to families of children living with serious health conditions.