Four-year-old Thalia-Beau Wright was diagnosed with restrictive cardiomyopathy at Leeds General Infirmary in December last year after battling with a persistent cough.
Doctors in Scarborough had been due to discharge Thalia but she was rushed by ambulance to the LGI when a cardiologist discovered that her heart was enlarged.
Thalia’s grandmother, Mrs Christine Johnson, 42, from Scarborough, described the experience as “horrendous”.
She said: “When we got there we were absolutely terrified as we were expecting heart surgery there and then. We felt physically sick.
“Then we found it it was restrictive cardiomyopathy which complicated things. The only option now is a heart transplant but at the time she couldn’t go on the list as her lungs had too much pressure in them.”
“It was horrendous. It felt like we were watching the whole thing happen to someone else.”
More in news: New care home in West Leeds for young people with mental health difficulties gets green lightThere is no cure or treatment for restrictive cardiomyopathy - a rare form of heart muscle disease that is characterized by restrictive filling of the ventricles.
The only known solution is a heart transplant.
Thalia will visit Newcastle Freeman Hospital for an assessment on March 25 and her family hope that she will finally be put on the transplant list.
In the meantime, Mrs Johnson, who is also grandmother to Thalia’s 4-month-old brother Rudy-blue, is working tirelessly to raise awareness of organ and heart donation across the country.
She said: “We have been desperate to raise awareness for her and so many others who need a heart transplant. We want to make a difference.
“Don’t get me wrong. I am so scared. I’m terrified. Some days are positive and other days are a blur where your heart just aches. But raising awareness gives me focus.”
“Unless people are directly affected they don’t think about organ donation as it’s such a taboo but Thalia is touching so many hearts.
“So many people are messaging me to say that they have seen her story and signed up to the organ donation register.”
More than 2,000 people are now following Thalia’s journey on Facebook and Instagram after Mrs Johnson set up the accounts three weeks ago.
However, little Thalia is none the wiser to her new online fame and is carrying on playing and having fun like any normal four-year-old.
Mrs Johnson said: “Thalia is fine and she’s so gorgeous inside and out. She’s bright, bubbly, sassy and a complete joy.
“She’s going to get through this. I’m sure of it. She is so amazing and she is going places and going far.”
Follow Thalia’s journey on Instagram @thaliaslittleheart or search Thalia's Beautiful Little Heart on Facebook.
More in news: North Yorkshire Conservatives have a problem with female politicians, says police commissioner Julia MulliganHow to register to be an organ donor
Anyone who wishes to be an organ donor can register online here.
It is important to tell your family if you want to be an organ donor as your family will be asked to support organ donation when you are in a position to donate them.