A FAMILY is urgently appealing for people to join the bone marrow register after their 10-month old baby was diagnosed with a rare medical disorder.

Reign Miller-Hardy, of Barry, was diagnosed with haemophagocytic lymphohistiocytosis (HLH) and X-linked lymphoproliferative disorder (XLP1) on August 7 this year.

The immune disorder affects one in every one-million boys and his family need to find a matching bone marrow donor so that his life can be saved.

His parents, Ashleigh Miller, 32, and Scott Hardy, 29, have to take turns to visit him in the Great North Children’s Hospital, in Newcastle upon Tyne, due to covid-19 restrictions.


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Reign’s auntie, Lisa Evans, 32, said: “It is a rare immune disorder in which the immune system damages the body's own tissue and organs such as the brain, liver, and bone marrow.

“Currently Reign is undergoing intense chemotherapy to suppress the HLH XLP1 symptoms.

“He has had multiple blood transfusions, lumbar punctures and several rounds of chemo, as well as numerous scans and tests.

“The day he was diagnosed, he was moved into intensive care at the University Hospital Wales where he remained until he was airlifted to Great North Children's Hospital on August 18.

“Great North is specialist children's hospital that works with Great Ormond Street to provide intense and urgent care to critically ill children.

“Reign’s initial onset of symptoms were similar to a virus a high temperature and general sense of being unwell,” she said. “Over the course of a week before diagnosis Reign’s parents took him to the doctor numerous occasions and it was put down to teething ear infections and possibly even covid-19 when symptoms persisted and he was admitted.

“That's when we knew something was seriously wrong.

“When they diagnosed HLH mum, dad, and the family were distraught.

“It's such a rare and serious illness and that's why it is so difficult to diagnose.

“We further discovered that this particular strain of HLH is genetic and will appear and be triggered by a common virus before the age of one year.

“Restrictions are in place due to covid-19 preventing both parents being able to be beside his bedside at the same time.

“It really does add an extra sense of pressure.”

Miss Evans added: “I am asking the public to come forward to have a bone marrow test.

“My baby nephew is in urgent need of a transplant and currently there is no match on the database.

“We are desperate to find a match for him the doctors have given a time frame of two weeks to two months to find a match.

“Without this he will not survive.

“We as a family are so urgently desperate to find a match and raise awareness not just for Reign but for so many others in need of a life-saving donor.

“When you give blood, you can also opt to join the bone marrow register."

There is a, book in advance, blood donation session in the Colcot Sports Centre, in Barry, this week (Wednesday, August 26 to Friday, August 28).

A simple mouth swab enables people to join the bone marrow register.

For information, visit www.wbs.wales/forReign; DKMS (age 17 to 55) https://www.dkms.org.uk/en/register-now; and Anthony Nolan (age 16 to 30) on https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells?utm_campaign=Appeal&utm_content=Register4Reign