Dave and Louise were over the moon when they welcomed their newborn son into the world. Now they have been told he only has a few years left to live
A family is devastated after their newborn son was given just a few years to live when he was diagnosed with a fatal disease just before Christmas.
Queensland parents Dave and Louise Gray were shocked when doctors told them in November that their son Kye had Leigh’s disease – a rare genetic condition that affects motor skills and energy levels.
The 10-month-old baby was placed in palliative care and now has only a few years to live. Children diagnosed with the condition have a life expectancy of two to three years.
The Grays also have a three-year-old daughter named Eva and are at their wits’ end about how to break the news to Kye’s older sister.
A family is devastated after their newborn son was given just a few years to live after he was diagnosed with a fatal disease before Christmas
Queensland parents Dave and Louise Gray are reeling from their son Kye’s shock diagnosis
‘She was very excited when he was born. She loves to constantly bring toys to play with him and cuddle him,” Mr Gray said.
The devastated parents said they noticed something was wrong ‘right from the start’.
‘[The first thing we] His eyes were striking, I felt like he was never really looking,” Ms Gray told Daily Mail Australia.
“He didn’t look at us, he didn’t smile.”
Ms Gray said Kye was constantly vomiting, seemed to lack energy and often struggled to hold his head up due to his low muscle tone.
She said they became concerned after Kye did not show the same physical signs as his three-year-old sister when she was around the same age.
“Eva hit her milestones early… look at the pictures of her at that age, she was smiling and stuff like that,” Ms Gray said.
‘[We] didn’t reach the same milestones with Kye.’
Ms Gray and her partner consulted a private paediatrician in the hope of finding out what was going on.
“When he did his assessments, he said he [Kye] displays [the ability of a child who is] two months old… like he was dying,” Mr. Gray said.
“That was still the stage where they weren’t sure why.”
Kye underwent several blood tests before being placed on a waiting list for an MRI scan following a last-minute cancellation.
His parents were told by staff at Queensland Children’s Hospital that the scan would take 45 minutes.
The worried couple ended up waiting two and a half hours before the hospital’s metabolic team told them to come back the next day.
The young parents were devastated when they heard of their son’s diagnosis and said they were still struggling to come to terms with the debilitating condition.
“That whole life-limiting thing was a huge shock to us,” Ms Gray said.
‘We have had many days and nights of crying and we are now at a stage where all we want to do is make memories with him.’
Kye’s mother Louise Gray told Daily Mail Australia she felt something was wrong with her son (pictured), who wasn’t reaching the same milestones as their daughter when she was around the same age.
The shocking diagnosis of the 10-month-old boy (pictured center) has left his family shocked and now ensuring he continues to receive the care and support he needs
The diagnosis is an additional blow to the Gray family after they lost their beloved dog before Christmas.
The couple now spends their time helping Kye by making sure he is comfortable and receives ongoing care.
Kye currently has monthly appointments at the hospital and receives occupational and speech therapy, while being seen by a physio every two weeks.
Kye is one of only eight patients in Queensland currently living with Leigh’s disease.
“We have very strong family and friend bonds with everyone,” Ms Gray said.
“When we found out, we reached out pretty quickly and let them know [of] the situation.’
“We just want to continue living with Kye as much as possible, we don’t want to hide.”
a GoFundMe page which was set up last month to help Kye’s family with ongoing medical costs, has raised about $6,600 of a $20,000 goal.