Harvey was three days old when he died in his dad’s arms of an extremely rare disease. Now his grieving family are fighting 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 is about to turn one, urgently needs a liver transplant due to a genetic condition.

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

Despite the challenges, Hunter’s father Peter told Ny Breaking Australia his son is doing well but urgently needs a liver transplant.

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

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

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 boy’s family, who live in Berri, almost a three-hour drive northeast of Adelaide, have been forced to consume very small amounts of a protein so Hunter can get his meals.

A liver transplant is the only cure for the disease, but Hunter is on a waiting list to receive the life-changing treatment.

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.

Mr Fletcher said while there are patients who have been diagnosed with the disease, specialists have never come across a patient like Hunter who has the unique variant.

“His case is the only variant they’ve ever seen so far,” he said.

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

Hunter’s father Peter, who is pictured holding Hunter in his arms and alongside his older son Harrison (centre) and his wife Caitlyn (left), told Ny Breaking that a donor has not yet been contacted so the 11 months old Hunter can be contacted. receive the life-changing treatment

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.