Mother-of-two reveals she is desperately trying to find a donor for her daughter, four, who needs a HEART transplant to survive her 'one in a million condition'
- 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 mother-of-two has revealed she is desperately trying to find a donor for her four-year-old daughter who requires a heart transplant due to her 'one in a million' condition.
Ellie-Mae Wright, 22, from Scarborough, North Yorkshire, is clinging on to the hope of finding a donor for her 'beautiful' daughter Thalia-Beau so she can undergo the potentially life-saving operation.
The youngster hasn't been given a percentage chance of survival or any time frame at this stage.
Ellie-Mae Wright is in search of a donor for her four-year-old daughter Thalia-Beau who is in desperate need of a heart transplant
But Thalia-Beau has been referred to the Freeman Hospital in Newcastle for transplant assessment on March 25.
Ellie-Mae has described how her 'world changed forever' after Thalia-Beau was diagnosed with 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.
Thalia-Beau was diagnosed with the 'one in a million' condition Restrictive Cardiomyopathy in November with doctors claiming her only chance of survival was a transplant
The devastating diagnosis came after Thalia-Beau was taken to Scarborough Hospital with a suspected common chest infection
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.'
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.
Ellie-Mae had given birth to her son Rudy just three days before being given the diagnosis. Pictured: Rudy and Thalia-Beau
Due to her condition, incredible pressure has been placed on Thalia-Beau's lungs -which 'work overtime' to cope with her heart defect. Pictured: The tot with her younger brother
'I remember being stopped and told something was wrong with the scans.'
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.
'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.'
Thalia's grandmother described her as 'gorgeous inside and out' as she aims to raise awareness of organ donation
Due to her condition, incredible pressure has been placed on Thalia-Beau's lungs -which 'work overtime' to cope with her heart defect.
If doctors deem Thalia-Beau suitable, she may be fitted with a 'Berlin heart' - a type of 'Ventricular Assist Device' to sustain her health.
Ellie-Mae, who had given birth to son Rudy just three days before being given the diagnosis, added: 'We haven't been given a percentage chance of survival or any time frame at this stage and we are just holding out hope she can get a new heart.
'She is bubbly, sassy and the most beautiful-natured daughter. She is unreal, I couldn't ask for a better daughter. I can't believe how brave she has been.'
The brave mum is now seeking to raise awareness of organ donation following the devastating news.
Thalia-Beau's grandmother Christine Johnson, 42, said she is the family's 'absolute world' and is 'gorgeous inside and out'.
She said: 'Thalia is our absolute world and is one in a million to everybody that knows and loves her, she is so gorgeous inside and out with the most beautiful little heart and soul.
'She's so bright and absolutely full of sass, she is utterly adored.
'As Thalia begins her journey for a new beautiful little heart, all we can focus on is raising organ donation awareness, we are desperate.
'It's unbearable to think about the other family but we can only hope in their darkest hours they give the gift of life.
'Please help to spread the word by sharing Thalia's story, you never know whose heart her story may touch and please share your organ donation decision with your loved ones.'
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