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Tribute to brave faye who loses life to genetic condition

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Carol Nickels couldn’t have been prouder when she found out her teenage daughter had won the ‘best smile’ award at her school prom.

But rather than celebrate the victory with 15-year-old Faye, all Carol was left with were photographs and memories of her infamous beaming expression.

Faye died two weeks after being diagnosed with a rare genetic illness just months before the milestone occasion at Campsmount School.

But in a touching tribute to the teen whose smile was said to “light up any room” she was honoured with the award and remembered fondly by pupils who released bright blue balloons into the sky in memory of their friend.

Carol said: “I thought it was lovely that she had won the award, she did have a smile that would light up any room.

“No matter what she was going through she always had a smile on her face.”

Medical experts told Faye’s family they had never seen anyone else in the world with the specific mutation of the incurable mitochondrial disease that was attacking every cell in her body.

The condition that Faye was born with was only picked up after she began having seizures following a kidney transplant.

Faye had endured three years of kidney dialysis before her doting grandad Paul Stein donated his kidney to the youngster in December.

But after the operation that was hoped would transform her life things took a turn for the worse.

Carol, of Sutton Road, Sutton said: “It was a massive operation but Faye was getting better, but days after the transplant she started having seizures.

“At first they were little ones but then she had one and they couldn’t do anything to stop it so she had to be put in an induced coma.

“She was diagnosed with progressive mitochondrial epilepsy after they did a muscle biopsy. It started to affect the muscles, nerves and then major organs. We were told there was no cure.

“We wanted to make sure we had done everything we could so we spoke to experts at Great Ormond Street and they told us no one else in the world had this particular mutation of the illness, no one had seen anything like this before. They didn’t know what they were dealing with, we just couldn’t believe it was happening.”

The family endured four months of what Carol describes as “pure hell” while Faye lay in a coma as doctors battled to control the illness.

But Faye was on so much medication that her organs were shutting down and mum Carol and dad Phil were faced with the heartbreaking decision to sign a do not resuscitate form.

“We went over every detail. We wanted to be sure we had done everything we could but in the end to keep her going would have been selfish,” Carol says.

“It was heartbreaking and then we had to tell her eight-year-old sister Mollie she wasn’t going to live. I couldn’t tell her. She saw me just break down and she was hugging me. The counsellor had to tell her in the end.”

Faye was moved to Bluebell Wood hospice on April 7 - a day before she died.

At the hospice Mollie organised a party for Faye so she had lasting memories of her big sister.

The Merry Christmas, Birthday, Easter, Blue and Purple Day was a celebration with all the family where they had presents for every occasion.

“Mollie was even able to bring along Faye’s and loyal dog Barney.

“We wanted Mollie to be able to have memories of Faye so we got her a camera for the day and we all came together.

“We can’t thank the staff at Bluebell Wood enough. They even let us bring Faye’s dog Barney in. Faye absolutely loved him. She was thrilled to bits when we got Barney, it completely changed her. It gave her something to focus on. He kept her going so it was so special that he got to go and sit on her bed.

“Faye’s aunties and uncles were there and we had a sing along as Faye loved music.”

After a fierce battle Faye died on April 8.

Carol said: “Despite what she went through for all those years being in and out of hospital she always had a smile on her face. From the whole time she was ill I can’t find a single photograph where she’s not smiling.

“I remember one day when she was in hospital after the kidney transplant. She was feeling really ill. She heard a baby crying in the hospital and told the nurse to go and see to the baby because no one else was going to get ill just because they were looking after her.

“That just summed her up really - she was always thinking about other people first.”

Since Faye’s death, Carol has thrown herself into fundraising for The Children’s Mitochondrial Disease Network and Bluebell Wood.

She is taking part in an 18 and a half mile midnight walk on October 25 at Sherwood Forest and pupils at Campsmount have also been raising money for the charities. They presented Carol with a cheque for £1,729.

Carol said: “My focus now is on raising awareness of the condition and on raising money.”

To support the Children’s Mitochondrial Disease Network visit www.cmdn.org.uk or call 01606 43946.

To support Bluebell Wood visit www.bluebellwood.org or contact 01909 517360.

 

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