Baby with rare blood disorder finds stem cell donor

A four-month-old baby diagnosed with a rare blood disorder has found a donor and had a stem cell transplant that could save her life.

Dolcie-Mae Edwards-Raymond, from Newport, has hemophagocytic lymphohistiocystosis (HLH) which can be life-threatening if left untreated or not diagnosed promptly.

Her aunt, Stephanie Curtis, said the transplant had given her niece a "second chance of life".

The stem cells were not an exact match but the family were "hoping and praying" that that her body reacts well and were now waiting for the results.

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 taken to the Royal Victoria Infirmary in Newcastle upon Tyne, where she was receiving specialist treatment.

The family had appealed for people between the ages of 16 and 30 to join the Anthony Nolan stem cell register to find a donor.

Ms Curtis said the donor was found "a couple of weeks ago" which led to Dolcie-Mae's cells being replaced.

"The lab had to get all the cells ready, take the bad ones out and give the good one's to Dolcie-Mae. I believe it was between five and seven days of chemotherapy to get rid of her cells," said Ms Curtis.

Dolcie-Mae and her mother Courtney-Jade remain at the hospital while the rest of the family are in their hometown of Newport.

"On the seventh or eighth day she had the transplant with the donors cells. I believe they were from Germany."

Ms Curtis said it would be "100 days from the transplant date" as the hospital continued to do regular tests to measure the number of cells in her blood.

"If her levels stay up, which hopefully they do, they think that the transplant will be successful."

Ms Curtis said the family were "keeping everything crossed" that it would be a successful match.

"We can only hope really that this has worked for Dolcie-Mae."

Ms Curtis said that as the donor was not a complete match it "won't be the best chance, but she will have a chance".

"We're all really happy now for Courtney and Dolcie-Mae. She's got all the support she can have with her friends and family."

Ms Curtis also heaped praised on the doctors and nurses who have cared for Dolcie-Mae since she was taken to the Royal Victoria Infirmary.

She added: "We appreciate every single thing they do."

The whole community has pulled together to support Dolcie-Mae, according to Ms Curtis.

"Until you go through something like this, you don't realise how close-knit the community is," she said.

The family were planning a fundraiser at the weekend to raise awareness about stem cell donation.

In a social media post the charity said that the mismatched stem cell transplant would "be her best treatment option" as there were no matches worldwide on the current register.