Harvey was three days old when he died in his father’s arms from an extremely rare disease. Now his grieving family fights to save his little brother from the same grim fate

The family of a toddler battling a rare medical condition that saw his older brother die in his father’s morning at just three days old are in urgent need of a life-saving transplant to save him from the same grim fate.

Hunter Fletcher, who turns one next week, is in urgent need of a liver transplant after being diagnosed with the same rare genetic condition as his late brother Harvey.

The 11-month-old boy has OTCD (ornithine transcarbamylase deficiency), a condition that causes an excessive build-up of ammonia in the body.

Hunter’s father Peter told Daily Mail Australia his son is doing well given the circumstances, but they were struggling to find a donor.

“He needs ongoing and constant care while we wait for a liver,” he said.

“We haven’t been contacted for a liver yet.”

Hunter Fletcher, who turns one next week, is in urgent need of a liver transplant after being diagnosed with the same rare genetic condition as his late brother Harvey

Ammonia is a type of waste that is usually processed through the liver, but when it builds up it can affect a person’s central nervous system. High levels of the toxic chemical can cause unconsciousness and even death.

The family, who live in Berri, northeast of Adelaide, can only feed Hunter small amounts of protein and feed him meals through feeding tubes.

Mr Fletcher said he called to donate his liver for his son and even stopped drinking so he could continue with the procedure.

“I wanted to be a donor and was sober for six months, but I discovered I had the wrong 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’ve ever seen so far,” his father said.

“It’s very rare… Doctors see maybe 1 to 2 cases a year.”

Mr Fletcher (pictured centre) said doctors have never seen a case like Hunter’s (pictured left with his wife Caitlyn) and said his son’s condition is one of the rare forms of OTCD currently existing (pictured right , Mr. Fletcher’s eldest son, Harrison.

Hunter’s mother Caitlyn Kourasanis shared 7 News she hopes the family will find the right donor to give her son a chance at life.

‘It’s the not-knowing. The phone can ring in the middle of the night. When I get a call from an unknown number, you wonder if this is the number,” Ms. Kourasanis said.

She says she is hopeful a donor can be found before Christmas.

The family lost their son Harvey to the same condition when he died in Peter’s arms from the devastating disease two years ago at just three days old.

Liver transplants from deceased donors were the second largest form of organ transplant needed, according to the latest government figures.

The family hopes they can find the right donor for Hunter (pictured) before Christmas, while the family spends the holidays at the Ronald McDonald House in Adelaide.

There was a three per cent increase in liver transplants between 2021 and 2022, but in South Australia the number of deceased organ donors who could have provided liver transplants fell from 29 to 20 over the same period.

The Fletcher family will spend Christmas at Ronald McDonald House (RMHC) in Adelaide, a community service they have taken advantage of since Hunter was born.

RMHC provides services to the families of children with serious medical conditions.