Aimee Read overcame leukemia as a child and then battled myelitis as a teenager, despite doctors’ predictions that she might need a wheelchair for the rest of her life
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A 29-year-old woman who died while awaiting a bone marrow transplant was “the light in the heart of our family,” her mother said.
Aimee Read was diagnosed with a life-threatening blood disorder in 2016 and had already undergone an unsuccessful bone marrow transplant.
Another donor was found and Aimee, from Ramsbottom, was due to have the transplant in July around the time of her 30th birthday.
However, her paroxysmal nocturnal hemoglobinuria (PNH) caused her to become seriously ill just days after receiving news of the second transplant, and died on May 28 after being rushed to intensive care with double pneumonia .
In an emotional tribute, Aimee’s mother, Wendy, described her daughter as “her world.”
“Aimee has had to endure so many things that most girls her age don’t have to go through,” she said. “Against all odds, she was always so strong and positive.
“Even when she was going through her worst times, she thought of others. She was always an amazing listener and so loving and caring. It was just a pleasure to be with her. Everyone loved her.
“When she used to go to the hospital, she made friends with so many patients and staff that she met. She just had this special gift for dealing with people.”
A GoFundMe page has been set up in memory of Aimee, with donations going to the blood cancer charity Anthony Nolan Trust and the Intensive Care Unit at St James’s Hospital in Leeds, where she was treated.
Aimee battled various diseases throughout her life and touched the hearts of the nation when she battled leukemia as a child.
She was just two years old when parents Mark and Wendy noticed she was lethargic, had lost her appetite and was bruising. Tests revealed she had leukemia.
After two years of chemotherapy at the Royal Manchester Children’s Hospital she appeared to be winning the battle, her hair grew back and she was entering primary school.
Six months later, the cancer returned. Her only chance of survival was a bone marrow transplant, but one of her family members matched and the Anthony Nolan Trust, which maintains worldwide records of donors, was unable to find a suitable donor.
Mum Wendy launched a massive awareness campaign that resulted in thousands of people joining the Bone Marrow Registry.
A match was found just before Christmas 1997. After the surgery, Aimee spent five weeks in hospital isolation, followed by six months in semi-isolation at home.
Her recovery was boosted by a surprise visit from David and Victoria Beckham.
Getting stronger, she returned to school and was given the all-clear about cancer at the age of 10.
But months after her 13th birthday, she was diagnosed with myelitis — a neurological condition that causes the brain and spinal cord to swell and cause paralysis. Doctors said if Aimee survived, she could be in a wheelchair for the rest of her life.
But Aimee’s fighting spirit got her through again and after three months she took her first unsteady steps to walk again.
In 2017, Aimee had a brain tumor removed that doctors 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 trial continued in January but was unsuccessful.
“It was absolutely devastating for us to find out that it hadn’t worked,” Wendy said. “That was our hope that she would start her life over again.
“Aimee was discouraged because she had mustered so much strength to keep going.”
Aimee and her family should receive a glimmer of hope on May 8 when they learned that another donor had been found. But while waiting for the transplant, she was hospitalized with a suspected infection.
Within days, she required oxygen to help her breathe. The family received word that Aimee had contracted pneumonia and it had spread to both lungs.
Despite doctors warning the family that their chances of survival were slim, Wendy, Mark and Aimee’s brother Jack all “lived in hope” until Aimee died surrounded by her family on May 28.
“We’re just devastated,” Wendy said. “She was the light in the heart of our family. She meant so much to us.
“We are such a close family because of everything we’ve been through. Aimee became an aunt for the first time in October and she absolutely adored her nephew.
“It hurts us that she won’t see him grow up.
“It’s a parent’s worst nightmare. We fought so hard for her to be here and now she isn’t. It doesn’t feel real. It’s just heartbreaking that she’s gone.”
A GoFundMe page has been set up in memory of Aimee, with donations going to the blood cancer charity Anthony Nolan Trust and the Intensive Care Unit at St James’s Hospital. Here you can donate.
https://www.mirror.co.uk/news/uk-news/tributes-paid-amazing-woman-who-27204731 Tributes to an 'amazing' woman who died while awaiting a bone marrow transplant