An-eight-year-old girl who planned her own funeral after doctors took four years to diagnose her with a rare form of bone cancer has died.
Darcy McGuire from Fife, Scotland, first became unwell at the age of three but despite repeated visits to her GP and a number of specialists, she was finally given the devastating news that she has chordoma in January this year.
Her family announced her death on Facebook this afternoon.
The post said: "It's with a hugely broken heart that I tell everyone Darcy Rae Mcguire gained her angel wings this morning 15.12.19.
"I can't even begin to tell people how devastated me and the kids are. But she passed away very peacefully at Rachel House and for that I will be eternally grateful.
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"I would like to say Thankyou to everyone who messages me for updates etc but me and the kids needed these last special few weeks without having to answer messages. I hope everyone understands.
"Darcy was truly one in a million and a huge part of my heart will never heal. I'm so grateful to have had 8 amazing years with her, she has taught me so much in this last year and the strength she has maintained throughout is what will keep me strong.
"Fly high with the angels my precious dear Darcy."
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After Darcy found out she was terminally-ill she not only helped her mum to organise her funeral but she raised thousands of pounds for the charity Children’s Hospices Across Scotland, which has provided valuable help and support to the family.
Darcy's mum Carol Donald has said she believed her daughter might have had a chance at fighting the disease if it had been picked up sooner.
Before Darcy's death the 38-year-old said: “If this had been found earlier, I have no doubt Darcy could have stood a chance at beating this cruel disease."
Carol first took Darcy to the doctor after she noticed a lump on her spine and she was in constant pain but was told repeatedly that there was nothing to worry about.
Carol said even when Darcy was losing weight and in agony last summer, doctors “still assured us it was just growing pains”.
It was only when Darcy started falling over daily in January this year that she was diagnosed with chordoma, an aggressive cancer that affects just one in 20million children worldwide each year.
By then, she had three large tumours on her spine and sacrum and there was nothing that could be done to save her.
The cancer at that time had spread to her ribs, lungs, skull, hand, arms and legs.
The devoted mum-of-five from Glenrothes in Fife, had said: “I was so angry and frustrated because I always knew, as her mum, that something was being missed.
“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.
“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.”
Carol said even the doctor who diagnosed Darcy in January “couldn’t believe how long it had been missed”.
Darcy was born with congenital kyphosis and needed two major operations at the Royal Hospital for Sick Children in Edinburgh to fuse her vertebrae and straighten her spine when she was a baby.
When Carol first noticed the lump on Darcy’s spine, she was referred back to the specialist in Edinburgh, who she said told her the girl’s spine “may look a little different because of the fusions”.
When she was finally diagnosed, Darcy was given emergency chemotherapy to try to shrink the tumours.
But just a week later, medics confirmed there was no treatment or surgery that could help.
Both NHS Lothian and NHS Fife said they were unable to comment on individual patients for reasons of confidentiality.
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