Share this article Share 'We can't even live a day without you.
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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.
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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, 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.
Girl, five, dies while waiting for a heart transplant after being diagnosed with rare condition
My whole world crumbled down around me. I couldn't believe it. In restrictive cardiomyopathy RCMthe heart's muscle cells are replaced with scar tissue. This causes the muscle walls of the ventricles the lower chambers speed dating în north yorkshire the heart to stiffen, which makes it harder for the heart to beat.
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.
Advertisement The devastating diagnosis came after Thalia-Beau was taken to Scarborough Hospital speed dating în north yorkshire 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 81 kr dating. 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. Ellie-Mae had given birth to her son Rudy just three days before being given the diagnosis.
The doctors told me she was incredibly unlucky to have the condition as it only affects one in a million children.
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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.
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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, comments, with well-wishers sending their thoughts and sympathies to Thalia-Beau's family.
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