WHEN Hayley Fairley noticed her daughter Millie had a rash she took her straight to A&E. It appeared after a string of other worrying symptoms, including headaches, bruising and fainting.
The family received a “horrible shock” when she was diagnosed with an extremely rare blood disorder, just days after turning 13 – and they’re now urgently looking for a stem cell donor to save her life.
Millie Fairley, from Eastbourne, East Sussex, was diagnosed with aplastic anaemia, which affects around two people in every million in the UK.
The condition means the bone marrow cannot make enough new blood cells for the body to work normally, making it harder to fight infection, stop bleeding or carry oxygen.
Her mum Hayley, 47, said the diagnosis changed their family’s lives “overnight”
Hayley said: “We’re completely devastated.
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“To be told that your child has a life-threatening condition is the worst possible news, it’s entirely changed our lives overnight.
Medics have told Millie’s family she needs a stem cell transplant to treat her condition.
But Hayley said if they can’t find a donor, she doesn’t know what they’ll do.
She added: “I’m trying to be positive through it all but it was so upsetting when none of the family were a match.
“I’m on edge waiting to see if we can find a matching donor.
“It’s a huge amount of stress for all our family.”
After complaining of headaches, getting a lot of bruising and fainting a few times, Millie was sent for blood tests by her GP.
It was while they were waiting for the results, her mum noticed a slight rash, so took her to A&E.
After additional blood tests, X-rays and an MRI, Millie was given her diagnosis and transferred to King’s College Hospital in London.
She’s now receiving regular treatment at Brighton Royal Children’s Hospital and has been forced to isolate herself.
My little girl should be starting teenage life, but she’s so vulnerable that she has to isolate at home or in hospital
Hayley Fairley
Hayley said: “My little girl should be starting teenage life, but she’s so vulnerable that she has to isolate at home or in hospital.
“She can’t see her friends, and it’s been a really lonely time for her. We just want her to get better, so that she can have her life back.”
Millie’s family are now working with blood cancer charity DKMS in a bid to encourage more people to register as donors and hopefully find her a match.
Hayley said: “It’s so important that people know that they can register as donors.
“You have a chance to do something so positive.
“I feel like getting the word out has given me some power to do something good in all this.
“Please think about signing up, it could change someone’s life, maybe even my daughter’s.”
DKMS spokesperson Bronagh Hughes said: “For Millie and patients like her, a total stranger joining the register could give them their lives back.
“The process is very simple, it’s so easy to give someone a second chance.
“Joining the register only requires a quick health questionnaire and a few simple and painless mouth swabs.
“It takes 10 minutes of your time, but you could be the match that Millie, or someone else like her, is waiting for.
“If you are matched to a patient and called up to donate, nine times out of 10 you can donate through your blood, similar to donating blood platelets, and DKMS will be there to support you through the whole journey.”
How to become a life-saving donor
T0 register with DKMS UK, you must be aged 17–55.
Order a swab kit: Visit the DKMS UK website and order your free swab kit. You will need to answer a few health questions to ensure you are eligible to donate.
Swab your cheeks: Follow the instructions provided in the kit. This involves using three swabs on the inside of your cheeks to collect cells and then mailing them back in the pre-paid envelope.
Join the register: Once your swabs arrive at the lab, your tissue type will be determined, and your details will be anonymously added to the global donor registry. You will receive a donor card via email.
What happens if you’re a match?
DKMS UK will contact you if you are a potential match for a patient.
Health check: You will be asked to provide a blood sample to confirm you are the best possible match.
Donation: The donation process, which is a stem cell collection from your bloodstream or bone marrow, will take place.
Transplant: The collected stem cells are transplanted to the patient, similar to a blood transfusion.
