The mother of a three-month-old baby girl diagnosed with a rare blood disorder has made an urgent plea for people to sign the stem cell register, aiming to save her daughter’s life. Dolcie-Mae Edwards-Raymond, who hails from Newport, South Wales, was initially thought to have contracted a viral infection when she began to fall ill and struggled to gain weight. Sadly, when she was just four weeks old, her parents, Courtney-Jade Edwards and Ashley David Raymond, received devastating news: their daughter had been diagnosed with hemophagocytic lymphohistiocytosis (HLH), a life-threatening immune deficiency disorder.
Upon receiving her diagnosis, Dolcie-Mae was swiftly airlifted to the Royal Victoria Infirmary (RVI) in Newcastle, where she is currently receiving specialized treatment. She is expected to remain at the hospital until a suitable stem cell donor can be identified. HLH occurs when specific types of white blood cells, known as histiocytes and lymphocytes, become overactive and begin to attack the body, which can be fatal if not treated quickly.
Statistics indicate the seriousness of this condition; between 2003 and 2018, there were 1,674 reported cases of HLH diagnosed across England, according to a 2022 study. This disorder can either be inherited or result from infections, with infants being more likely to suffer from the inherited version.
Courtney-Jade expressed the depth of her family's anguish, stating, "No family should have to go through such an awfuljourney, 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. To hear 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 those brighter days was awful, leaving us feeling so helpless.”
The family is fervently appealing to individuals aged 16 to 30 to join the Anthony Nolan stem cell register to help find a matching donor for Dolcie-Mae. "Help give patients like my baby girl a second chance at life," Courtney-Jade insisted, emphasizing the impact of stem cell donations. "A stem cell transplant from a stranger, someone like you, can be their only hope. Please join the stem cell register." The call to action is straightforward: by signing up, potential donors could directly influence the life of someone like Dolcie-Mae.
Charlotte Cunliffe, director of register development at Anthony Nolan, offered her support for the family during this challenging period, highlighting the organization’s mission. She 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 who sign up to our register."
Cunliffe continued to outline how easy it is for people to contribute meaningfully, stating, "If you are aged 16-30, please sign up to the Anthony Nolan register online and send back your swabs. You could be the matchthat someone like baby Dolcie-Mae needs to survive.”
Dolcie-Mae's fight is not only her own but also resonates with countless families facing similar health crises. Her older sister, Dollie-Rae, is currently being cared for by their grandmother, allowing their parents to focus on supporting Dolcie-Mae during her treatment. The family, needing to balance their emotional support for each other from afar, maintains connections through daily FaceTime calls.
Dolcie-Mae’s aunt, Stephanie Curtis, expressed the sincere challenge their family faces: "It’s not the same as being there together, but it’s the closest we’ll ever get to seeing her at this time. 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.” The urgency of the family's situation underlines the importance of community support, as they all are pulling together to advocate for Dolcie-Mae and others who are desperately seeking donors.
The Edwards-Raymond family’s plea is more than just about Dolcie-Mae; it's about raising awareness of HLH and the need for stem cell donors, helping to educate the public on what they can do to help secure second chances at life for babies and individuals like Dolcie-Mae. This is not just another call for assistance; it's about creating hope where it is needed most.
Time is of the essence, and with every passing moment, Dolcie-Mae's family remains hopeful for matching stem cell donors to come forward, providing not just potential lifesaving solutions, but the chance for their family to create cherished memories together.