Sitting here silently in the early hours of the morning, frothy coffee in hand thinking about Baby Reign Miller-Hardy.
A few minutes after being woefully woken by the almost halfway hurricane swirling around our town, a flick through Facebook found me being touched by the Barry boy’s plight.
The local family’s fragile world was thrown into terrible turmoil last week when a high temperature finally led to the beautiful baby being diagnosed with primary HLH XLP1 – a genetic life-threatening condition that only affects 1 in every 1 million boys.
Heartbreaking news for the once happy family who have now seen their son airlifted to Newcastle Great North Children’s Hospital as he battles this deadly disease.
And to wait for the bone marrow match that he urgently needs.
But there is no donor available for Reign – anywhere in the world.
Beyond belief to imagine how that must feel as a Mum, all hopes and dreams dashed by a shock diagnosis coupled with knowing that there is no match…for now.
Those last two words are the first glimmer of hope in this heartbreaking story as Barry, as always, comes together again as a connected community – this time to rally for Reign.
Racing against the clock, our resilient residents are queuing up to take a test to see if their bone marrow matches the baby boy’s to help save his life.
And, as we always do too, we are all strongly sharing Reign’s story on all our social media to spread the word for any willing donors to find the details on how to donate.
The tale from our town has also been picked up by local, regional, and national media spreading the search all over the nation.
Giving blood is the first step to helping so please take the time to click through to the Welsh Blood Service if you are willing, and able of course, to try to save our Barry baby – wherever you live.
Anyone giving blood can opt to join the bone marrow register, or you can join direct with a simple mouth swab – details below:
This may be seen as a big ask by some but, in my view, it is a small sacrifice to save a life.
And as the family say: “We are desperate for a match for our little guy and wouldn’t dream of posting this if it wasn’t urgent.”
They have also started a Facebook Fundraiser to raise cash so the shell-shocked parents’ living costs are eased whilst they stay at their boy’s bedside in Newcastle.
There is also a Baby Reign Facebook Group, for all of us to follow, what we pray will be the story of Reign’s recovery.
Reign’s doting Dad Scott has thanked the hospital for their speedy treatment to date, and also locals for their donations.
But he, and Mum Ashleigh Miller, have stressed that the number one quest is to urge as many as possible to take a swab or blood test to find a match.
Scott calls Reign his ‘Little Prince,’ which resonates with me as it’s just one of my endless endearments for my own boy.
A son I’ve have been blessed enough to see grow from a bouncing baby to a seriously strapping lad – a privilege that will be spitefully snatched from these poor parents if a match is not made soon.
So please take that test or sort that swab if you can.
Sending my heartfelt hopes for a happy ending to the family.
And lots of love to their little man.
Sue Vincent-Jones, writing as Mrs SVJ, is a Barry born journalist, editor, and communications specialist. She blogs about Barry – and her life in the wider world, through the eyes of a, quirky and queer, local girl done good.
Mrs SVJ, Barry’s Boldest Blogger, can be contacted here.