'Family is forever broken': Five-year-old girl dies while waiting for a heart transplant

A brave five-year-old girl who was waiting for a donor to undergo a life-saving heart transplant has died. Photo / Thalia's Beautiful Little Heart

A brave 5-year-old British girl who was waiting for a donor to undergo a life-saving heart transplant has died.

Thalia-Beau Wright's mum Ellie-Mae Wright had been told her only hope was a heart transplant, but tragically the youngster died before she could have one.

The child had restrictive cardiomyopathy which stiffens the heart ventricles, and was diagnosed in 2018.

Last year she started a campaign online to raise awareness for organ donation. She was still waiting for a match when she died.

The family has now launched an additional fundraiser to help may for Thalia's funeral.

Brave Thalia-Beau Wright, five, who was waiting for a donor to undergo a life-saving heart transplant, has died. Photo Thalia's Beautiful Little Heart

Writing on Facebook, her distraught mother said their family will be "forever broken".

"How will we ever live without your beautiful heart and soul? How will the world still turn without you in it?

"How will there be light without your smile? Nearly six blissful years of you here in our arms, and a lifetime ahead with you in our hearts.

"We can't even live a day without you. Our family will forever be broken but we will live in this heartache knowing how blessed we were to call you ours. Sleep tight our precious princess."

The condition is an ultra-rare form of muscle disease which stiffens the ventricles around the heart.

"When I was told what was wrong with her everything started going slow. My whole world crumbled down around me. I couldn't believe it," Wright said.

The devastating diagnosis came after Thalia-Beau was taken to hospital with a suspected common chest infection.

After two days in hospital she was about to be discharged, when the nurses sprinted down the corridor to inform them the scans showed something was wrong.

Thalia-Beau's devastated family announced yesterday that the youngster had succumbed to the rare illness. Photo / Thalia's Beautiful Little Heart

"We thought everything was fine and she had been discharged, we were just about to leave. I remember being stopped and told something was wrong with the scans," Wright said.

"I remember being taken into the room and being surrounded by doctors.

"At the time I thought Thalia-Beau might need an operation so I was worrying about that.

"However, I never expected to be given the news. The doctors told me she was incredibly unlucky to have the condition as it only affects one in a million children."

Due to her condition, incredible pressure had been placed on Thalia-Beau's lungs -which "worked overtime" to cope with her heart defect.

Before Thalia passed away, she managed to meet some of her favourite celebrities - singer Lewis Capaldi and entertainer Jason Manford.