Posted: 07.09.20 at 14:36 by Alex Jones
A 9.5-mile walk from the centre of Barry to raise money for the parents of Reign Miller-Hardy was joined by 45 people and raised £2,100.
The 11-month-old is currently in the Great North Children's Hospital in Newcastle where he is receiving treatment for the rare disease HLH XLP1. The proceeds will go to the Miller-Hardy family, who have borne the heavy financial cost of caring for a seriously ill baby.
Nub News spoke with the walk organiser, Reign's great-aunt Lisa Evans, about how it went.
"Oh God, I’m actually really aching today - 9.5 miles isn't nothing. That's why it's so amazing to see so many people come out.
"It was a really nice day, just brilliant that so many people are showing their support for Reign."
Reign's parents, Scott and Ashley, are currently living in hospital accommodation in Newcastle. On top of the emotional burden, the financial impact of Reign's illness has been immense.
"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."
Lisa was also able to give an update as to Reign's current condition.
“It has been tough but we’re staying positive. Reign’s doing really well at the moment - he’s stable so that’s good.
“The last week he’s been responding really well to chemo. They have to suppress the HLH symptoms to make him strong enough to receive bone marrow and that’s worked now.
“So he’s ready for a transplant but we just can’t find a match, and the chances of someone matching is one-in-a-million.”
She says the family have been overwhelmed by the kindness and generosity they have seen in the community.
"We honestly can't believe it. I've been working very closely with Anthony Nolan and they said they have never seen such a big response from a single appeal.
"So hopefully Reign’s story will save so many other people along the way."
The family continue to appeal for potential donors. Sign up here: