Nathalie Soffe, from Hove, was first diagnosed with acute lymphoblastic leukaemia in November 2004.
She was just eight years old.
Nathalie had more than two years of treatment and suffered with pancreatitis caused by a chemotherapy drug.
She relapsed when she was 12 years old in August 2008.
Because of Nathalie’s reaction to one of the chemotherapy drugs, a bone marrow transplant was the only option for her survival.
A suitable bone marrow donor was found in the USA. The treatment to get Nathalie’s body ready to receive the transplant, at times left her screaming in pain.
The transplant in January 2009 was a success.
Nathalie’s mum Karen, who lives in Orchard Ave, Hove, said: “Considering the awful times Nathalie had endured, she sailed through the transplant. Or that is what was thought at the time.
“Nathalie returned to being a normal fun loving energetic teenager, and got back to her love of singing and dancing.
“But in 2019 breathing began to be more laboured.”
Nathalie was diagnosed with pleuroparenchymal fibroelastosis (PPFE), a rare lung disease.
Very little is known about the disease, but it is known that one of the causes can be a bone marrow transplant along with some of the chemotherapy drugs.
There is no treatment to cure this progressive disease and the only option is a lung transplant.
The tests that Nathalie needed were cancelled because of the Covid outbreak and by the time the hospital clinics restarted Nathalie’s condition had worsened and she was on supplementary oxygen.
Nathalie went on the lung transplant list in June 2021.
Just after Christmas 2021, she had an unidentified infection and was due to be in hospital for five days for antibiotics.
Karen said: “Devastatingly, Nathalie never received her transplant and passed away unexpectedly on January 14, 2022, at just 26 years old.”
Now, her mum has had just over 12 inches of her hair cut off and donated it to The Little Princess Trust, two years ago, Nathalie, posthumously donated some of her hair.
The Little Princess Trust makes and donates real hair wigs for children and young people suffering with cancer and other conditions which cause hair loss.
She said: “Nathalie had planned to have her hair cut and donate it to The Little Princess Trust in that January.
“One of her final wishes was to still donate some of her hair. With The Little Princess Trusts agreement, this was posthumously done for Nathalie.
“She always wanted to help people. Because of the unknown infection, Nathalie was unable to donate anything else.”
Karen and her other daughter Charlotte also found a small charity, Breathing Matters, linked to the University College London Hospital and in turn a consultant radiologist, Joe Jacobs and his colleagues, who are carrying out much needed research into PPFE.
Karen is also fundraising for this charity.
Karen said: “I wanted to personally do something to help, but I am not sporty or a runner, so I grew my hair long enough for the current minimum donation of 12 inches. It also had to be a day that linked with Nathalie. The day was emotional, thinking back two years, to Nathalie posthumously having hers cut too.”
Karen had her hair cut at Magic Hair, in Blatchington Road, Hove, where she and Nathalie always had their hair cut.
After the cut Karen said: “We will continue to think of things to do, to help raise funds for this vital research and to keep Nathalie’s memory alive.”
Karen has raised nearly £2,000 so far.
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