An eight-year-old girl with just months to live has helped to plan her own funeral, after it took doctors four years to diagnose she had an aggressive cancer that affects just one in 20 million children.
Darcy McGuire’s heartbroken mother Carol Donald suspected there was something wrong with her daughter from the age of three.
The youngster had a lump on her spine and was in constant pain. Despite repeated trips to her GP and various specialists until Darcy was seven, Miss Donald says she was constantly made to feel she was wasting their time.
She was assured it was nothing to worry about, as Darcy had two operations as a baby to fuse part of her spine. Even when Darcy, from Glenrothes, was losing weight, tired and in such agony last summer she could no longer join in with her peers, Miss Donald said doctors “still assured us it was just growing pains”.
It was only when the youngster began falling over daily earlier this year she was finally diagnosed with an extremely rare form of bone cancer called chordoma.
By then, she had three large tumours on her spine and sacrum and her devastated family was told there was nothing that could be done to save her.
The cancer has now spread to her ribs, lungs, skull, hand, arms and legs.
Miss Donald, 38, said: “Hearing the news that my youngest daughter was terminal was the worst day of my life.
“I was so angry and frustrated because I always knew, as her mum, that something was being missed. I really struggled because, at the bottom of my heart, I felt there was something wrong but we kept being told by specialists we trusted that everything was OK.”
Spokespeople for NHS Fife and NHS Lothian said they cannot comment on individual cases.
Mother-of-five Carol said: “I’ve always been extremely honest with Darcy about her illness and she knows that one day she is going to die.
“Darcy has helped plan every single part of her funeral along with me. This was extremely important to me because I wanted her to have everything her way,” Carol added.
“When your child is given a terminal diagnosis they don’t have a choice or say in their death but I was determined to give Darcy something she could control.”
The five-year survival rate for the disease is around 68%, with surgery offering the best outcome.
Miss Donald firmly believes had Darcy’s condition been picked up sooner, her daughter might have had a chance of fighting the disease, which normally affects those over 50.
The tumours have left Darcy paralysed from the waist down and she takes multiple painkillers every day.
After three rounds of high-dosage chemotherapy, Darcy made the brave decision to stop treatment and concentrate on making memories that her family could cherish.
In January the youngster was given just a few months to live but her proud mother said: “She is still here and fighting strong.”