Five-year-old girl dies while waiting for a heart transplant

‘Our family will forever be broken’: Devastated parents of girl, 5, who needed a heart transplant after being diagnosed with a rare condition reveal she has died while waiting for a donor

• Thalia-Beau Wright was diagnosed with Restrictive Cardiomyopathy last year 
• Her mother Ellie-Mae was told her only chance of survival was a heart transplant
• Ellie-Mae says that her ‘whole world crumbled’ when she got the diagnosis  

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

The devastated family of Thalia-Beau Wright, who was diagnosed with restrictive cardiomyopathy in 2018, announced yesterday that the youngster had succumbed to the rare illness.

Writing on Facebook, her distraught parents from Scarborough, North Yorkshire, said their daughter was ‘and will always be the best thing’ that ever happened to them.

In the heart-wrenching post, they said their family will be ‘forever broken’. 

Brave Thalia-Beau Wright, five, who was waiting for a donor to undergo a life-saving heart transplant, has died 

‘How will we ever live without your beautiful heart and soul?’ it read. ‘How will the world still turn without you in it? 

‘How will there be light without your smile? Nearly sic 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.’  

Last year Thalia-Beau’s mother Ellie-Mae Wright, 24, started a campaign to raise awareness for organ donation. The family has since launched an additional  fundraiser to help pay for Thalia’s funeral. 

Thalia-Beau’s devastated family announced yesterday that the youngster had succumbed to the rare illness

Writing on Facebook, her distraught parents from Scarborough, North Yorkshire, said their daughter was ‘and will always be the best thing’ that ever happened to them

Ellie-Mae described how her ‘world changed forever’ after Thalia-Beau was diagnosed with ‘one in a million’ restrictive cardiomyopathy on November 16, 2018.

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

Ellie-Mae was told by doctors the only hope for her ‘sassy’ and ‘bubbly’ Thalia-Beau was a heart transplant – as the condition currently has no cure or treatment.

She said: ‘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.’

Ellie-Mae Wright had been told by doctors that the only hope for her ‘sassy’ and ‘bubbly’ Thalia-Beau was a heart transplant – as her condition currently has no cure or treatment

Last year Thalia-Beau’s mother Ellie-Mae Wright, 24, started a campaign to raise awareness for organ donation

Ellie-Mae described how her ‘world changed forever’ after Thalia-Beau was diagnosed with ‘one in a million’ restrictive cardiomyopathy on November 16, 2018

WHAT IS RESTRICTIVE CARDIOMYOPATHY? 

In restrictive cardiomyopathy (RCM), the heart’s muscle cells are replaced with scar tissue.

This causes the muscle walls of the ventricles (the lower chambers of the heart) to stiffen, which makes it harder for the heart to beat.

In particular, the stiffened muscles cannot relax properly, which means the ventricles can’t fill with blood. This lowers blood flow around the body.

Some people with RCM have no, or very mild, symptoms. But over time, the restricted function of the heart can lead to heart failure, symptoms for which include tiredness, shortness of breath and palpitations.

RCM is relatively rare compared to other types of cardiomyopathy. It is most often diagnosed in children at 5–6 years of age, although it can develop at any age.

Although RCM cannot be cured, treatment aims to reduce and control symptoms, particularly those of heart failure. In some cases where the heart function is very poor, people may require a heart transplant.

It can be genetic and run in families. It can also develop following some treatments for cancer, such as radiation therapy.

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

Following two days in hospital, the family were preparing to return home after Thalia-Beau was discharged.

However, just minutes before they were due to leave, Ellie-Mae described how hospital staff ran down the corridor to stop them.

Ellie-Mae said: ‘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.’

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

Doctors had discovered Thalia-Beau had an enlarged heart and she was immediately rushed to Leeds General Infirmary for further checks.

After the scans were completed, Ellie-Mae was taken into a separate room to be given the news.

She added: ‘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.

Ellie-Mae had given birth to her son Rudy just three days before being given the diagnosis. Pictured: Rudy and Thalia-Beau 

‘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. 

Ellie-Mae, who had given birth to son Rudy just three days before being given the diagnosis, said they weren’t given a percentage change of survival or a time frame, so were holding out hope she could get a new heart.  

Thalia-Beau’s grandmother Christine Johnson, 43 previously said she is the family’s ‘absolute world’ and ‘gorgeous inside and out’.  

Due to her condition, incredible pressure was placed on Thalia-Beau’s lungs – which ‘worked overtime’ to cope with her heart defect. Pictured: The tot with her younger brother 

After her initial diagnosis, Christine told how the little girl had enjoyed family days out at their local beach and had started school.

But this year her health took a devastating turn for the worst, meaning she had longer stints in hospital.  

The Facebook page set up by her parents has thousands of followers, while Thalia-Beau did manage to meet some of her favourite celebrities – Lewis Capaldi and Jason Manford. 

Yesterday’s heartbreaking post attracted nearly 2,000 comments, with well-wishers sending their thoughts and sympathies to Thalia-Beau’s family. 

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