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A mother has issued a plea for more people to add their names to the stem cell register amidst fears of her daughter dying from a rare blood disorder. The baby girl, belonging to parents Courtney-Jade Edwards and Ashley David Raymond from Newport, was diagnosed with hemophagocytic lymphohistiocystosis (HLH) aged four weeks old. HLH is a life-threatening immune deficiency disorder that if not diagnosed promptly or left untreated could be deadly.
The condition arises when certain white blood cells that ordinarily help fight off infections become overactive and start attacking the body. Following her diagnosis, Dolcie-Mae was airlifted from her home to a specialist centre at Newcastle’s Royal Victoria Infirmary immediately, requiring immediate intervention. It was also reported that the baby will have to remain in hospital until a matching stem cell donor is found.
As such, the family is now encouraging people aged from 16 to 30 to join the Anthony Nolan stem cell register. Ms Edwards appealed for people to join the register, saying that “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.”
Whilst trying to keep positive, the family has joined the register in order to try and find a donor for Dolcie-Mae, who will have to remain in the hospital until one is found. Charlotte Cunliffe, the director of register development at Anthony Nolan, commented that “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
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