Meet one of the bravest 14-year-olds in the North West

Operations Support Administrator Hazel Tracey’s life was turned upside down last year when her daughter, Mia, was diagnosed with two extremely rare life threatening conditions. Hazel is sharing her story to raise awareness of bone marrow registers and the difference you can make in somebody’s life by signing up to one.

In May 2022, Hazel noticed her daughter Mia was not acting herself. She told us, “She was tired all the time which at first, I thought is normal for a 14-year-old, but she then started to bruise easily so I took her to the doctors. They ran blood tests and after additional tests, Mia was diagnosed with severe aplastic anaemia. She went from being a book-loving teenager to being too tired to even read a chapter.”

Severe aplastic anaemia is a rare and life-threatening blood disorder caused by the bone marrow not functioning properly. The condition is so rare that up to only two in one million people have it. In some cases, aplastic anaemia can be controlled using medications and blood transfusions. Unfortunately for Mia, her diagnosis is severe and, with the additional diagnosis of paroxysmal nocturnal haemoglobinuria (PNH), another rare, life-threatening disease of the blood, which she was diagnosed with in December last year, she will need more intensive treatments.

Hazel said, “Currently, Mia is transfusion dependant, which means she has been in and out of hospital since October last year for platelet and blood transfusions. But this is only a temporary solution, Mia desperately needs a bone marrow transplant. If a donor is found, Mia will undergo either chemotherapy which will help her body get ready for transplant. If not, we will have to explore other limited options.”

In children, a transplant can be curative much of the time. Mia’s mum, dad and little sister were not a match, so they are now looking to the donation register for a stranger’s match. However, the register of donors is very limited. Hazel explains, “Not many people are aware of the bone marrow donor register and how easy it is to join. By simply sending in a cheek swab, you will be told if you are eligible to join the register. Statistics show that in 90% of cases, donating bone marrow is just the same as giving blood. It’s not as scary as what you might think. My daughter is now doing everything she can to raise awareness and hopes that she can encourage at least one person to join the donation register to help people in similar situations to her.”

Mia has taken to social media, spoken to her school and her family’s employers to shine a light on her condition, and raise much-needed awareness.

Just four months later, Mia’s family received the call they had been waiting for, a match had been found. Hazel said, “In late February we got a call to say not only had they found a match but they had four matches, all from complete strangers! We were over the moon. They chose the best match and after extensive checks Mia had her bone marrow transplant on the 10 March. It’s been tough on her but she’s now on the road to recovery.”

Hazel said, “Mia has been amazing throughout. She is such a fighter. She has her down days, but she is determined to get better. I have reached out to my colleagues to ask them to consider joining the register. Everyone at work has been so supportive, especially my manager. I can’t thank them enough.”

For more information about the bone marrow donation register, visit antonynolan.org and dkms.org.uk.