Weeks to save our little girl
One in a million illness means Thalia, 5, needs urgent heart and lung transplant
THEY were just five words but they changed everything: “Thalia is on the list.”
After seemingly endless months of waiting, five-year-old Thalia-Beau Wright was eligible for the heart and lung transplant she needed.
But while it meant she could have the life-saving surgery at last, it also marked the beginning of a desperate quest to find organs.
Thalia has a condition called restrictive cardiomyopathy, which her grandmother Christine Johnson compares to “a ticking bomb”.
Christine said: “She could have days, weeks or months. We just don’t know. We got the call we’d waited for for so long. I can’t put into words what that call meant.”
The family are all too aware it will be a race against time for the child.
But even in their hour of need they have made it their mission to appeal for potential organ donors – to save not just Thalia’s life but all the hundreds of other children waiting for that call.
“We’re still a long way off,” Christine said. “We need a healthy heart and lungs that’s not just from someone with a blood group that is compatible with Thalia’s, but also approximately the same size. Thalia is one in a million and if we don’t have hope, we don’t have anything. Now we have hope like we haven’t felt in years.”
The little girl was diagnosed with the heart condition in 2018 a few days after her fourth birthday and the arrival of her brother Rudy.
With no cure or treatment, the family was told her only hope lay in finding her new organs.
But she was only assessed as being in enough need or fit enough to go on the list last week.
She is in high dependency at Leeds General Infirmary after battling pneumonia and is the only child in the UK on the urgent donor waiting list for a heart and lungs.
If or when that call finally comes, she will be blue-lighted to Great Ormond Street Hospital in London to replace her organs with healthy ones and give her a chance at life. Thalia’s mum EllieMae, 24, from Scarborough, North Yorks, said: “Within a week our family went from the euphoria of having a new baby to absolute devastation.
“Thalia was so excited about turning four and having a little brother. It was like a knife had been placed in our hearts.
“Thalia is the most energising, smiley little girl in the world, and for her to finally be on the list is what we’ve been praying for for so long. Of course we’ve a long way to go yet but this last week has felt like a massive step forwards.”
Restrictive cardiomyopathy is an
We are still a long way off, we need organs the same size as Thalia’s CHRISTINE JOHNSON ON GRANDDAUGHTER’S HOPE
exceptionally rare muscle disease which stiffens the ventricles around the heart, causing it to become enlarged.
Doctors at Scarborough Hospital noticed Thalia’s was swollen after she was admitted with a chest infection.
She was quickly transferred to Leeds General Infirmary where the family were given the nightmare diagnosis.
Then began the tortuous waiting game. “It was – and still is – the most horrible state of limbo, trying to pretend everything was normal, Thalia unable to understand how all the odds were stacked against her,” said Christine, 43, who helps care for her with her husband Simon, 40, Thalia’s grandfather.
After two further stays in Leeds General Infirmary, Thalia was then referred to the Freeman Hospital in Newcastle for a heart transplant assessment. But Thalia wasn’t deemed to be a viable candidate because by then she had pulmonary hypertension, a secondary disease to her cardiomyopathy, meaning she now also needed a double lung transplant.
Thalia was then referred to Great Ormond Street Hospital for a second opinion.
She did relatively well for a long time after that initial diagnosis, Christine says, enjoying many largely carefree days at the family beach chalet near their home in Scarborough, starting school and a trip of a lifetime to Disneyland Paris. However, 2020 brought a rapid decline in her health, with infections and complications meaning more time in hospital. The family shared Thalia’s story on social media to raise awareness of organ donation and to champion the NHS. Their Facebook page now has almost HERO Manford & Thalia 5,000 followers and Thalia has met heroes including Lewis Capaldi and Jason Manford – although she still wants to meet her biggest idol, Stormzy. Christine said: “We’d never heard of restrictive cardiomyopathy, as the chances of having it are exactly what Thalia is to us... one in a million. She’s the most bubbly, sassy, beautiful little girl, inside and out. It breaks all our hearts to think about what she’s got, what the future holds.
“It’s such a hard thought to take in, knowing that another family’s whole world will come crashing down so that ours can be saved.
“But the heart-breaking reality is that tragedies happen every day, where lives can’t be saved. It’s in those terrible circumstances we hope families can find it in themselves to save a life like Thalia’s.”
Nearly 300 children have died in the UK in the past 10 years waiting on the organ donor transplant list.
Angie Scales, NHS Blood and Transplant lead nurse for paediatric donation, says: “It’s so important for families to talk about organ donation and to include their children in those conversations. By saying yes to organ donation, families are in a position to give another family hope.
“Donor families tell us they take great pride and comfort from the knowledge that they have helped to save lives.”
Christine said the family has been contacted by “countless strangers around the world” saying how they have been inspired by Thalia to sign up to organ donor registers.
Christine added: “The Mirror’s campaign has been amazing but any family has to know that their consent is still required if a child dies.
“The chances of a child openly stating their intentions before their death are obviously very low and in the depths of grief it’s so hard to make these decisions.”
She adds: “Thalia continues to fill our world with complete sunshine, she has the most beautiful little heart and soul, and she is a complete and utter joy.
“Everyone that comes into contact with her says there is something special about our beautiful little princess.”
■ Follow Thalia-Beau’s journey at www. facebook.com/thaliasbeautifullittleheart.