Baby Reign: How a 'miracle' bone marrow transplant gave a Barry family hope

By Ellyn Wright

5th Mar 2021 | Local News

Reign Miller-Hardy, an 18-month-old with the rare disease HLH XLP1, has finally returned home to Barry after spending eight months at a Newcastle children's hospital.

Here is the story of how a "miracle" bone marrow match allowed Baby Reign to come home.

A rare diagnosis

In August last year, Reign was diagnosed with a life-threatening genetic condition – hemophagocytic lymphohistiocytosis (HLH).

It causes specialised white blood cells to become overactivated causing severe inflammation and damage to areas such as the liver, spleen and bone marrow.

The condition, in its primary form, is genetic and only affects one in every million boys.

Little Reign's family issued an urgent plea for bone marrow donors to come forward in the hope of finding a match that would save his life.

But, despite searching a global database, no match could be found.

After his diagnosis, Reign underwent intense chemotherapy and was put into an induced coma. He was transferred from University Hospital Wales to a hospital in Newcastle in order to receive specialist care. Due to the Coronavirus pandemic, the little boy's parents, Scott Hardy, 28, and Ashleigh Miller, 32, had to take it in turns to be by their son's bedside, as only one of them was allowed onto the ward at a time. 'Overwhelmed by generosity' The Barry community quickly rallied together to help support the family. Reign's great-aunt, Lisa Evans, organised a 9.5-mile walk from the centre of Barry in September to raise money, and was joined by 45 people. The walk raised £2,100. "It was a really nice day, just brilliant that so many people are showing their support for Reign," Lisa told Nub News following the walk. "Scott was self-employed so he's lost his income and can't work. They have their bills to pay down here and their living expenses in Newcastle. "So, I really felt I had to do what I can to support them, and the response we got was amazing." She told Nub News that the family had been overwhelmed by the kindness and generosity of the Barry community. All the while, the family continued to appeal for people to sign up to the bone marrow register in the hope of finding a life-saving match for Reign. A 'miracle' match Then, just two days after Reign's first birthday, a miracle happened. The massive drive for donors resulted in a 9/10 match for Reign, meaning that the donation was unlikely to be rejected. "We are overwhelmed, obviously really happy. Reign's birthday was Wednesday so what a perfect birthday present," Lisa told Nub News at the time. In a Facebook post, Ashleigh Miller expressed her emotions upon hearing the news: "I think I am meant to be happy and relieved but all I'm feeling is fear and emptiness." Following a week of chemotherapy, Reign was due to undergo a bone marrow transplant procedure on November 16. Reign's parents were told their baby has an 75-85% chance of survival. A life-saving transplant Reign underwent four sessions of the stem cell transplantation over the course of a week in mid-November. Doctors were able to save some of Reign's own healthy T-cells to put in along with the donor cells. Despite the side effects of receiving chemotherapy and the transplant, Lisa told Nub News that Reign was "still smiling and staying strong." "We are incredibly thankful to the donor and still urge people to sign up if they are eligible for stem cell and blood donations," she said. Home at last After spending seven months in Newcastle, Reign was finally able to return home to Barry on Wednesday. He will require lifelong medication to ensure no complications due to the transplant arise but has otherwise been given the all-clear. Reign and his parents arrived in Barry at 3pm on Wednesday, where they were greeted by family and friends. "Because of lockdown and then him being taken to Newcastle, we hadn't seen him for over a year," Lisa told Nub News. "Seeing him today was absolutely amazing - he was all happy and full of smiles. "I've been crying all day." Reign's young cousins, Ollie and Lily, joined their family to welcome him back with balloons. "He's so cute," said Lilly, aged 8. "I can't believe how big he is." Ashleigh expressed her joy and bringing her son home in a Facebook post. "Thank u [sic] so much for all the support for our Baby Reign it littro [sic] got us through the past 8 months," she wrote. Others took to Facebook to show their support. "Welcome home Baby Reign!! You've proved time and time again that you're a little warrior!! Enjoy seeing all of your family!! Also, Welcome Home to Scott and Ashleigh," one supporter wrote.

The family also shared pictures of Reign settling back into family life in Barry after months away from home.

People aged 17-30 can join through giving blood with the Welsh Blood Service, or request a swab kit from Anthony Nolan or DKMS. Those aged over 30 and up to 55 can register here.

For more details please go to www.welsh-blood.org.uk or www.anthonynolan.org.

     

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