Scarborough woman raising awareness of organ donation to help the search for a new heart for four-year-old granddaughter Thalia

Four-year-old Thalia-Beau Wright was diagnosed with Restrictive Cardiomyopathy, a condition which affects one in a million people. Her grandmother Christine Johnson said: “On

November 16 our world changed forever when we were given the devastating news that our beautiful Thalia has Restrictive Cardiomyopathy.

“Just a few days earlier we had been in Scarborough Hospital as Thalia was suffering from a chest infection, she’s been prone to these after having bronchiolitis and pneumonia as a baby and we were always terrified of her getting a poorly chest again.

“We were just about to be discharged when suddenly it was all systems go as it was noticed on a chest x-ray that Thalia’s heart was enlarged. The rest is a blur, a cruel bubble that we are still trapped in.

“We were quickly transferred to Leeds General Infirmary, and at that point we thought there was a problem with a valve and Thalia may need surgery. We were petrified at the thought of that but after arriving at Leeds and Thalia having a more in-depth scan, the diagnosis was much worse.”

The family were told that it is an extremely rare condition and there is no treatment, medication or operation – a heart transplant is her only hope. With Restrictive Cardiomyopathy the heart’s ventricles become stiff, due to the muscle cells being replaced with abnormal tissue which restricts their contraction. It affects how the ventricles fill with blood and reduces the blood circulation through the heart and to the body.

Just days before her diagnosis Thalia’s baby brother, Rudy, was born ... within days the family went from “pure joy to absolute devastation,” according to Christine.

Speaking about her granddaughter, the 42-year-old 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.”

After a couple of stays in Leeds General Infirmary and a heart catheter, Thalia has now been referred to the Freeman Hospital in Newcastle for transplant assessment in March. The family don’t know what the future holds until then, but for now are enjoying Thalia’s “new normality” at home.

In preparation for Thalia’s hope of a transplant, Christine said: “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.”

How to become a heart donor

Tell your friends and family that you want to be a heart donor – it is very important that they understand and support your organ donation decision because your family’s support is needed for donation to go ahead. Dealing with the death of a loved one is a difficult time to make an important decision quickly.

Sign up to the Organ Donor Register online. The NHS Organ Donor Register is a secure database that records people’s decision around whether or not they want to be an organ and tissue donor when they die. Or call 0300 1232323.