‘Shattered my heart’: Tragic tribute for ‘precious’ baby whose body shut down

A heartbroken NQ couple who lost their ‘precious’ baby daughter to a rare genetic disease are on a mission to spread awareness to ensure other parents don’t endure their same tragedy.

Alayah Taylor was only nine weeks old when she died in hospital sleeping in a her father’s arms.

Just a few weeks after her premature birth on January 31, she was diagnosed with mitochondrial disorder – a rare genetic disorder affecting every cell in her body.

It was a bombshell diagnosis that her Ayr parents, Hayley Spencer and Grant Taylor, said would change their lives forever.

“It was affecting her brain and heart, they told us we would have no life with her, and we’d be lucky to have her till her second birthday,” Ms Spencer said.

“It completely crushed us.

Ayr mum Hayley Louise tragically lost her nine-week-old daughter Alayah to mitochondrial disorder. Picture: Supplied

“We didn’t speak. I felt sick. All I could do was just cuddle her tighter.

“We were already planning her first Christmas and her first birthday, and then to be told we aren’t going to be able to do any of that with her — it was completely gut-wrenching and shattered my heart.”

Tragically, Alayah’s body continued to shut down and her family were left with the heartbreaking decision to let her pass on peacefully on Good Friday, April 15.

“We took her off the machines and she was sleeping in her father’s arms when she left us,” Ms Spencer said.

After losing her baby, Alayah’s parents are now on a mission to raise awareness and funds for research into mitochondrial disorder.

Ayr mum Hayley Spencer tragically lost her nine-week-old daughter Alayah to mitochondrial disorder. Picture: Supplied

“Hardly anyone knows about mito but you can actually get tested and find out when you are 10-12 weeks pregnant to see if your babies got it,” Ms Spencer said.

“We found out in all of this, that Alayah carried two different mutative genes and my partner and I are also carriers.

“If it wasn’t for this, we would have never known, and there may be people out there like us who also have no idea and want to have a baby.

“I don’t want any other family to go through what my family has gone through.

“It will always be the worst thing that I have gone through in my life.”

Alayah’s family are hosting an ‘Every Cell Matters’ fundraiser at Plantation Park, Ayr on September 25, coinciding with Mito Awareness Week.

Originally published as ‘Shattered my heart’: Tragic tribute for ‘precious’ baby whose body shut down