Sleep tight, princess
Family’s anguish as brave heart girl, 5 loses battle for life
CHRISTINE JOHNSON ON CHILD ORGAN DONATION
THE family of brave five-year-old Thalia-Beau Wright say their hearts will be “forever broken” after their little girl passed away.
Thalia was finally put on the waiting list for a new heart and lungs last month. She was diagnosed with restrictive cardiomyopathy almost two years ago, days after her fourth birthday and the birth of her baby brother, Rudy.
She could not be put on the waiting list for organs earlier due to bouts of illness with infections and pneumonia. Her story touched Mirror readers as her family clung to the possibility of finding donor organs to save her.
But Thalia died at Martin House Hospice near their home in Scarborough on Monday, surrounded by family. Christine Johnson, Thalia’s grandmother, says: “Thalia was and always will be the best thing that ever happened to us.
“It just feels like the world can’t turn any more without Thalia in it.” Nearly 300 children have died in the UK in the past 10 years while waiting on the organ donor transplant list.
The Mirror successfully campaigned for organ-donation consent to be assumed – “Max & Keira’s Law” has been in force since May – but that only applies to over-18s. Thalia-Beau could only take donated organs if they were the right size. Christine, 44, added: “The Mirror’s campaign for an ‘opt-out’ system for organ donation is amazing, but it wasn’t enough for Thalia. Families with children need to have that conversation now, that they will donate.
“By the time you’ve lost your little one and are in the depths of grief, like we are now, it might be too late.” Thalia’s story inspired thousands to sign up to organ donor registers, and express their wishes to loved ones. It even managed to reach celebrities including Lewis Capaldi and Jason Manford, the toddler’s heroes – who she got to meet in her final few months. Christine added: “There was something so special about her. “With Thalia gone we will have to live with this heartache, knowing how blessed we were to call you ours.”
■ The family is asking for donations to help pay for Thalia’s funeral: justgiving. com/crowdfunding/thalia-beau.
Families with kids need to have the talk now that they will donate