A 5-year-old girl who was diagnosed with a rare condition has passed away while waiting for an organ donor.
It was in 2018 when Thalia-Beau Wright was diagnosed with restrictive cardiomyopathy, a rare condition when the ventricles or walls of the lower chambers of the heart become too rigid to expand as they fill with blood.
Thalia’s mother, Ellie-Mae, was told by doctors that the only hope for her daughter was a heart transplant.
“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 shared.
“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.”
Because of her condition, too much pressure had been placed on the girl’s lungs, which had to ‘work overtime.’
In a heartbreaking post, her grieving parents said their family will be ‘forever broken.’
“How will we ever live without your beautiful heart and soul?” they wrote. “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.”
Thalia managed to meet some of her favorite celebrities – Jason Manford and Lewis Capaldi.
According to Web MD, many people with the condition have only minor ones and they live a normal life while others get severe and the heart’s condition gets worse.
Symptoms of the condition include shortness of breath, swelling of feet and legs, palpitations, fatigue, inability to exercise, chest pain or pressure, and fainting.
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