A young heartbroken mother-of-two has spoken out about her daughter’s ultra-rare disease and explained she is desperately looking for a donor to save her 4-year-old daughter’s life.

22-year-old Ellie-Mae Wright from North Yorkshire is a mother of a beautiful and lively girl who is suffering from a “one in a million” condition that requires her to get a heart transplant in order to survive.

While the youngster is clinging onto life, Ellie is actively looking for a heart donor so that her daughter could undertake the life-saving procedure.

As the 22-year-old expressed, her “world changed forever” after she discovered that her daughter, Thalia-Beau, was suffering from Restrictive Cardiomyopathy.

According to the doctors who set the dreadful diagnosis in November 2018 after the family scheduled a checkup thinking that Thalia is suffering from a common chest infection, the disease has no cure and the girl requires a heart transplant in order to live.

“When I was told what was wrong with her everything started going slow,” Ellie recalled.

“My whole world crumbled down around me. I couldn’t believe it.”

After several days in the hospital, the family was ready to leave. Only minutes after being discharged, however, the staff came running after them to share the bad news.

“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.

“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 worried 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,” Ellie said.

After learning that her daughter is suffering from a rare heart defect that requires a transplant, the brave mother set out on a mission to raise awareness about her daughter’s condition and find a heart donor.

“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,” Ellie added.

“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.”

Christine Johnson, Thalia’s grandma, also spoke out and 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.”

Please SHARE this heartbreaking story with your friends and family to raise awareness and help Thalia find a new heart!

 

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