Devastated mum Karon Adkins wipes away her tears as she arranges her daughter’s funeral - almost 15 years after burying her baby son.
It was in 2005 tiny Leonie King was born in October, eight weeks premature and just one year after her brave mum lost baby Leon, aged only 17 weeks.
Then Karon was faced with more heartache after Leonie, who was only 3lb when she was born, was diagnosed as having severe cerebral palsy, was epileptic, blind and needed 24-hour care.
But now Karon is saying goodbye to her 13-year-old princess with a horse drawn carriage and sparkling purple coffin before Leonie joins her little brother in Cowpen Cemetery graveyard.
“I feel as though this a nightmare and I’ll wake up and this won’t be real, but I know it is,” said Karon, 43, of Blyth, Northumberland.
Leonie loved classical music and built up a friendship with X Factor group G4 after meeting them through a charity.
The modern opera band have now sang in her memory and their moving video is being played at her funeral on August 23.
“She met G4 through the charity Out of Sight and they serenaded her on Valentine’s Day 2017 as well as having high tea with them in York on her 13th birthday,” said Karon.
“They have created a video of her in her memory and put it on singer Jonathan Ansell Official Facebook page and it has had over 17,000 views.”
Leon lost his fight for life in November 2004 after being born with a rare genetic condition and a short time later Leonie was born with bleeding lungs and a irregular heartbeat.
But she defied the odds and survived.
She spent nearly two months under the care of doctors in the special care baby unit at Newcastle’s Royal Victoria Infirmary and was diagnosed with her complex conditions when she was around nine-months-old.
Leon spent just 10 days of his short life at home with his family. The rest of his time was spread between intensive care units at Newcastle’s General Hospital and the Royal Victoria Infirmary and Wansbeck Hospital in Ashington.
Doctors were baffled by Leon’s condition and experts in Germany tested Karon and his father’s DNA to find the source of the illness.
The youngster had a one-off mutation of an extremely rare genetic condition that affected his muscles and meant he couldn’t breathe alone.
And doctors told Karon there was just a three in one million chance of Leonie inheriting the condition but doing a test to check if it was present would increase the chance of a miscarriage by 1%.
Last month Leonie had a viral infection and a high temperature. She was given antibiotics but she died in her sleep at home.
“When I lost Leon I named my daughter Leonie after him,” said Karon, who also has children Natalie, 21, Amy, 19, Zoe, 18, Lukas, 12 and six-year-old Maddison.
“Leonie’s birth helped me through Leon’s death. She helped me focus on her living. She was actually in the same bay as Leon in the intensive care baby unit at the RVI. In her first four weeks I lost count how many times I was told that she wouldn’t pull through.”
Karon, who suffers a crumbling spine and is confined to a wheelchair, added: “I organised Leon’s funeral like a robot. When I saw his little casket go into the ground my knees just buckled.
“Leonie is having a horse drawn carriage and her coffin is beautiful. Although she was blind she could see some things and her favourite colour was purple. Her coffin is sparkling purple glitter with a lilac satin lining. With her is her Hungry Caterpillar toy, her iPad and her two favourite teddies. She is dressed in her pyjamas and dressing gown. We want the day to be as special as the princess she was.”
G4 tenor singer Jonathan Ansell posted the video they made for Leonie on his Facebook page saying: “It has always been wonderful to sing for Leonie and see her face light up. You will be sorely missed and certainly never forgotten by us all.
"I will always cherish the time we came to your house and sang for you and your friends in your living room. RIP xx”
Karon added: "Leonie had the biggest smile and everyone who met her just loved her. She was my princess but she will be with Leon now."
Leonie's funeral is being held at 11.30am on Friday, August 23, at the chapel at Cowpen Cemetery, Blyth, and friends and family are invited to Newsham Victory Club, on Elliot St, Newsham, Blyth, afterwards. There will also be a donation collection at the service to buy Leonie a headstone.
