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Katie Matthews, 32, has been told she has just six years to live without a transplant.
Abnormalities were initially detected at the scan where she and husband Tommy, 37, found out they were having two babies.
Following a biopsy, Mrs Matthews was diagnosed with myelofibrosis, a type of blood cancer that leads to scarring in the bone marrow, the soft, spongy tissue inside the bones which makes blood cells.
This scarring hinders the bone marrow’s ability to create red and white blood cells and platelets.
The mother of three, from Lincoln, said: “Being a mother and being pregnant while being diagnosed with blood cancer is the worst thing that you could hear.
“We felt like our lives have been paused.”
At a pregnancy scan in June 2024, clinicians told Mrs Matthews she was having twins but also noticed her spleen was enlarged and she had a blood clot in her portal vein, which carries blood from many organs in the belly to the liver.
She said: “We were told ‘your twins are fine, but your spleen is about 25 centimetres’.
“Me and my husband thought, ‘what do you mean twins’.”
Following a biopsy, Mrs Matthews was diagnosed with myelofibrosis in July, when she was 15 weeks pregnant.
The couple welcomed healthy babies Bella-Rose and Lennon last October, who were delivered at 32 weeks due to the risks.
Mrs Matthews said medics have said that hers is the only case of its kind on record, which she described as “terrifying”.
It is estimated there are around one to two cases of myelofibrosis per every 100,000 people in the UK each year.
“I’ve had so many different doctors, consultants, professors involved but they never know what’s right or wrong because this has never happened,” she added.
The beauty therapist, who specialises in laser hair removal, started oral chemotherapy in January and is hoping to find a stem cell donor after it was recently confirmed her brother is not a match.
The family are working with the stem cell charity Anthony Nolan, which is searching worldwide registers.
“The stem cell transplant is the only cure for my cancer,” Mrs Matthews said.
“It will give me more time, a whole new life basically. Without a transplant I’ve been roughly given about six years.
“The community for myelofibrosis is so small, especially for the younger generation.
“I hope sharing my story helps to meet others like me.”
The family are also trying to raise awareness of the Anthony Nolan stem cell register.
As Liverpool FC fans, they are planning to attend the team’s Premier League trophy parade on Monday in Anthony Nolan T-shirts.
Mrs Matthews added: “You could save somebody like me. I want to be able to live the rest of my life and have more time with my children.
“I’m going to stay strong and positive, and I also want to help as many people as possible.
“I’m not prepared to die now and I’m not going to.”
People aged 16 to 30 can apply to join the Anthony Nolan stem cell register online and will receive a swab pack in the post.
Rowena Bentley, head of programme and community recruitment at Anthony Nolan, said: “It’s thanks to patients like Katie sharing their story that we can raise vital awareness of stem cell donation and encourage more people to join the register and save lives.
“We know that younger stem cell donors give patients the best chance of survival. That’s why we’re calling on healthy 16–30-year-olds to join the register – to give patients like Katie more time with those they love.”
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