A 29-year-old woman who died while waiting for a bone marrow transplant was “the light at the heart of our family”, her mum has said.
Aimee Read had been diagnosed with a life-threatening blood disease in 2016 and had already undergone one unsuccessful bone marrow transplant.
Another donor was found and Aimee, from Ramsbottom, was due to undergo the transplant in July at around the time of her 30th birthday.
However, her paroxysmal nocturnal hemoglobinuria (PNH) caused her to fall seriously unwell just days after she received news of the second transplant and she died on May 28 having been rushed to intensive care with double pneumonia.
In an emotional tribute, Aimee's mum Wendy described her daughter as “her world”.
"Aimee had to endure so many things that most girls her age don't have to go through," she said. "Despite all the adversity, she has always been so strong and positive.
"Even when she was going through her worst times, she was thinking about others. She has always been an amazing listener and so loving and caring. She was just a joy to be around. Everyone loved her.
"When she used to go to hospital, she befriended so many of the patients and staff she came across. She just had this special gift with people."
A GoFundMe page has been set up in memory of Aimee, with donations going towards blood cancer charity the Anthony Nolan Trust and the intensive care unit at St James’s Hospital in Leeds, where she was treated.
Aimee fought various illnesses throughout her life and touched the hearts of the nation while battling leukaemia as a child.
She was just two years old when parents Mark and Wendy noticed she was lethargic, had lost her appetite and started to bruise. Tests revealed she had leukaemia.
After two years of chemotherapy at the Royal Manchester Children’s Hospital, she seemed to be winning the fight, her hair grew back and she started primary school.
Six months later, the cancer returned. Her only chance of survival was a bone marrow transplant but one of her family members were a match and the Anthony Nolan Trust, which keeps a worldwide record of donors, could not find a suitable donor.
Mum Wendy started a massive awareness campaign, which led to thousands of people joining the bone marrow register.
Shortly before Christmas 1997, a match was found. After surgery, Aimee spent five weeks in hospital isolation followed by six months in semi-isolation at home.
Her recovery was given a boost by a surprise visit from David and Victoria Beckham.
She went from strength to strength, returned to school and at the age of 10 was given the all-clear from cancer.
But months after her 13th birthday, she was diagnosed with myelitis – a neurological disorder where the brain and spinal chord swell, causing paralysis. Doctors said if Aimee did survive she could be in a wheelchair for the rest of her life.
Yet Aimee’s fighting spirit pulled her through once more and after three months she took her first faltering steps to walking again.
In 2017, Aimee had a brain tumour removed which doctors had discovered during a routine MRI scan.
Her condition began to deteriorate last year and she was told she would need a bone marrow transplant. The procedure went ahead in January but was unsuccessful.
"For us to find out it hadn't worked was absolutely devastating," said Wendy. "That was our hope that she would start her life again.
“Aimee was deflated because she had mustered up so much strength to go ahead with it."
Aimee and her family were to receive a glimmer of hope on May 8 when they learned another donor had been found. But while awaiting the transplant, she was admitted to hospital with what was believed to be an infection.
Within days, she required the use of oxygen to help her breathe. The family received the news that Aimee had caught pneumonia and that it had spread to both lungs.
Although doctors warned family that her chances of survival were slim, Wendy, Mark and Aimee's brother Jack all “lived in hope” until Aimee died on May 28 surrounded by her family.
"We are just devastated," said Wendy. "She was the light at the heart of our family. She meant so much to us.
"We are such a close family due to everything we've been through. Aimee became an auntie for the first time in October and she absolutely adored her nephew.
“It's hurting us that she will not be around to see him grow up.
"This is a parent's worst nightmare. We have fought so hard for her to be here and now she is not. It doesn't feel real. It's just heartbreaking that she isn't here anymore."
A GoFundMe page has been set up in memory of Aimee, with donations going towards blood cancer charity the Anthony Nolan Trust and the intensive care unit at St James’s Hospital. You can donate here.
