Wakefield family share their journey ahead of Aplastic Anaemia Awareness Day

This was the case for mum Kerry from Wakefield, when her daughter Lexi-Mae was diagnosed with aplastic anaemia at the age of seven.

Aplastic anaemia is a rare and serious blood condition that can be fatal, where the bone marrow is not producing enough blood cells. It can leave the body more prone to infections and uncontrolled bleeding.

March 4 is Aplastic Anaemia Awareness Day, a day to recognise the hundreds of people impacted by this condition across the UK every year.

Whilst many will associate the word anaemia as being something that can be treated with iron, aplastic anaemia is a very serious condition that requires hospitalisation and some children and adults do not survive the condition.

Lexi-Mae’s family’s lives were thrown into turmoil in March 2021 when she was diagnosed with aplastic anaemia.

Unfortunately, treatment using antibodies was not an option for her and her family was told she needed a bone marrow transplant, a treatment people will most commonly associate with cancer.

After a few agonising months of waiting for a suitable donor, the amazing news was received – a match had been found and Lexi-Mae had her bone marrow transplant in November 2021.

Kerry said: “Lexi-Mae’s treatment involved chemotherapy and intensive radiotherapy, which meant she would lose her hair.

"She had to spend four weeks in an isolation room at Leeds General Infirmary to protect her from potential infections. In the months running up to the transplant, she had to rely on weekly platelet and blood transfusions – involving long, tiring days on the ward for a seven-year-old.

"She wasn’t allowed to go to school, or even see friends or family, as she was classed as vulnerable. We were in total isolation for 18 months.

“Candlelighters were absolutely amazing during our numerous stays in the hospital.

"From a friendly chat and words of encouragement to doing any washing or shopping we needed as we could not leave the isolation ward. They came and did craft activities with Lexi-Mae and played games, which really helped pass time.

"One day she specifically remembers is having a special superhero party, while I had a massage to relax over at The Square - all supported and funded by the amazing Candlelighters Team!”

Now, nearly one and a half years post-transplant, Lexi-Mae is doing well, she’s allowed back to school and has recently been chosen as a class ambassador.

Her school donated money through their Christmas fayre to Candlelighters for the support they provided, and the family continue to fundraise for the charity.

“We have seen how much support they give to families both in and out of the hospital, and how vital any funding is. We will never forget what a huge relief they were for us – we can’t thank them enough and will do anything we can to try and give something back.”

To support children like Lexi-Mae and their families, Candlelighters relies on generous donations from the community.

If you’d like to support Candlelighters with a donation, you can do so here https://www.candlelighters.org.uk/