A Scarborough woman is hoping to promote Organ Donation Week in the town, following the devastating news that her granddaughter’s only chance of survival is a heart transplant.
Christine Johnson wants to share her granddaughter Thalia-Beau Wright's story by putting up posters, holding a fun day at her beach chalet, handing out leaflets, painting and hiding rocks and tying hearts in areas for people to see in the town.
Four-year-old Thalia was diagnosed with Restrictive Cardiomyopathy, a condition which affects one in a million people last year.
Talking about Organ Donation Week, which is held between September 2-8, Christine said: "We are looking for local businesses that will let us pitch a spot with our official organ donation merchandise as we want to share Thalia's story to spread awareness.
"We will be holding a full day at our beach chalet where people can come and have a chat, handing leaflets out in town and putting up posters, we will just be very busy, lots of people will be painting and hiding rocks for us, we will also be tying hearts in areas for people to see.
"I am desperately trying to get the Castle or the big wheel on the beach, something like that to light up pink for us."
When Thalia was diagnosed, 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.
Organ Donation Week is a time to shine a light on donors and the impact they have on transplant recipients as well as an opportunity to educate, inform and inspire people, to help save and improve more lives.
Recently, Thalia underwent a heart transplant assessment at The Freeman Hospital in Newcastle and the outcome is that Thalia can't be listed for a heart transplant just yet as the pressures in her little lungs are too high.
Christine added: "This doesn't change the fact that the only option for Thalia is a heart transplant but it now means it could be heart and lung, right now she is too little for that, The Freeman Hospital are now liaising with Great Ormond Street Hospital to talk about ways to reduce the lung pressures so that they can get her listed for a heart transplant.
"Thalia is stable right now and all we can do is pray she continues to stay like this for as long as she possibly can. We know that can change at any time so we are living every day in a bubble of uncertainty."
The four-year-old will start school next month while the family are "trying to keep Thalia's little life as 'normal' as possible."