Mum of baby with rare blood disorder HLH urges people to sign stem cell register in bid to save daughter’s life

The mother of a baby girl who was diagnosed with a rare blood disorder has urged people to sign the stem cell register in a bid to save her daughter’s life.

Doctors initially suspected a viral infection when three-month-old Dolcie-Mae Edwards-Raymond, from Newport in South Wales, fell ill and failed to gain weight shortly after she was born.

However, when she was just a month old, her parents Courtney-Jade Edwards, 22, and Ashley David Raymond, 28, were told she has hemophagocytic lymphohistiocystosis (HLH).

The immune deficiency disorder occurs when certain types of white blood cells, known as histiocytes and lymphocytes, become overactive and attack the body.

It can be life-threatening if left untreated or not diagnosed promptly.

Following her diagnosis, Dolcie-Mae was airlifted to the Royal Victoria Infirmary in Newcastle from her home where she is receiving specialist treatment.

She will remain in hospital until a matching stem cell donor can be found.

Ms Edwards said: “No family should have to go through such an awful journey, watching their child fight a battle bigger than themselves.

“You could help give families like ours a chance to make memories by signing up to the register today.

“When Dolcie-Mae’s dad, Ashley, and I found out our daughter had HLH we were devastated. We had no idea about this rare blood disorder until she was diagnosed.

“To hear that our daughter’s body was attacking itself was just so heartbreaking. Knowing there was absolutely nothing we could do but sit beside her and pray for better days was awful, leaving us feeling so helpless.”

The family are now appealing for people between the ages of 16 and 30 to join the Anthony Nolan stem cell register to find a donor for Dolcie-Mae.

“Help give patients like my baby girl a second chance at life,” Ms Edwards said.

“A stem cell transplant from a stranger, someone like you, can be their only hope. Please join the stem cell register.”

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Charlotte Cunliffe, director of register development at Anthony Nolan, said: “It’s heartbreaking to think about what little Dolcie-Mae and her family are going through and we are supporting them through this uncertain time.

“At Anthony Nolan we give hope to families affected by blood cancers and disorders, but we can’t do it without the lifesavers that sign up to our register.

“If you are aged 16-30, please sign up to the Anthony Nolan register online and send back your swabs. You could be the match that someone like baby Dolcie-Mae needs to survive.”

According to a study published in 2022, there were 1,674 people with HLH diagnosed in England between 2003 and 2018

There are two types of HLH.

One is inherited and usually affects babies under the age of one, while secondary HLH is caused by infections and usually happens after age six.