Anthony Nolan stem cell plea issued to save baby’s life

The mother of a three-month-old baby girl diagnosed with a rare blood disorder is urging people to sign the stem cell register in a bid to save her daughter’s life.

Doctors initially suspected Dolcie-Mae Edwards-Raymond, from Newport, had a viral infection when she fell ill and failed to gain weight.

However, she was just four weeks old when her parents were told Dolcie-Mae has hemophagocytic lymphohistiocystosis (HLH) – a life-threatening disorder if left untreated or not diagnosed promptly.

The infant must now remain in hospital until a matching stem cell donor can be found.

HLH is an immune deficiency disorder which happens when certain types of white blood cells, known as histiocytes and lymphocytes, become overactive and attack the body.

There were 1,674 people with HLH diagnosed in England between 2003 and 2018, according to a study published in 2022.

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

Her parents Courtney-Jade Edwards, 22, and Ashley David Raymond, 28, are now appealing for people between the ages of 16 and 30 to join the Anthony Nolan stem cell register to find a donor.

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

“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,” she said.

“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.”

Ms Edwards said stem cell donors can give patients like her daughter “a second chance at life”.

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

Dolcie-Mae’s older sister Dollie-Rae is living with her grandmother while her parents are in hospital with Dolcie-Rae.

The girls’ aunt, Stephanie Curtis, said the family were keeping in touch with daily FaceTime calls rather than visiting them in hospital to avoid the risk of spreading any infections to Dolcie-Mae.

“It’s not the same as being there together but it’s the closest we’ll ever get to seeing her at this time,” Ms Curtis told BBC Radio Wales Breakfast.

“We’ve got to stay strong for Courtney and Ashley and the baby and, not forgetting, Dollie-Rae who is without her mum as well.”

Ms Curtis said the family had joined the register to try and help Dollie-Rae and others, and urged more people to do the same.

“She really does need an urgent stem cell transplant to save her life, to give her second chance at life.”

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.”