Meet Alex and Elayna

“No child should ever be sick. It’s just so wrong, in so many ways. But for parents doing all they can to stay positive for children facing serious illnesses across Ireland right now, I can tell you – time at Barretstown is magic. I know because myself and my beautiful wife Nikki are dad and mam to not one, but two little ones living with an often-isolating, scary condition that’s so rare, it’s estimated to affect only one in a million people.

It can leave our Alex and Elayna covered head to toe in swollen, massive bruises. Or needing special meds and days in hospital to stop the bleeding for scrapes and bumps that are just an ordinary part of growing up for other children. Hours after Elayna was born, the life we imagined changed completely...I’d just made a quick trip home when my wife Nikki rang me from hospital.

They wouldn’t know why for months. With all her bloods coming back normal, scans of her head, everything the experts could think of, who would suspect Elayna had a disorder almost no one else on earth had?

When our little man Alex came along a few years later, Crumlin and Cork specialists knew. Our children have Glanzmann thrombasthenia. Or GT, for short. GT is ultra-rare. I don’t think there’s eight or nine people in Ireland that have it. Yet we found ourselves the young parents of two children with GT.

Our children can bruise just from sleeping. They bleed at the drop of a hat. And when they do, they don’t stop.

Endless questions race through your head: With such a rare, serious diagnosis, could our babies ever be ‘just kids’?”

The Social Stigma

There is another part to our story that is really hard to share. But it’s as real as the beat of your heart – the social stigma that families face.

From our time at Barretstown, I know children going through chemotherapy or even steroid treatments feel it as well, as do their families and extended families. And it’s that sometimes you and your children become a curiosity. For your bald head, or your ‘moon face’ from swelling. Or worse, the object of scorn or negative judgements.

So, you can only imagine how people stared at my family... at me... at my tireless wife Nikki. Two little children, all patched up. Bruised black and blue. Walking down the street you get the feeling people think you’re actually hurting your child, and that’s a horrible feeling for a parent who’s trying to do their best for their beloved little one – their complete bundle of joy!

It got to where we tried to stay inside, and that’s a lonely way to live”.

Alex and Elayna's Arrival at Barretstown

“When our Crumlin and Cork Haematology teams told us about Barretstown and we saw the lovely testimonials of all that your generosity makes possible, we applied.

I still get emotional thinking of how, if not for support like the kind I hope you’ll send with your gift of any size today, we might not have been able to come.

Families like ours can’t just go on holidays. We’re trained to give medicine, and we take it everywhere we go, but Alex still has a port-a-cath fitted – and we always need access to a haematology clinic. To come up the drive into Barretstown, past the lake and the wooded land, then to know there’s a med shed onsite with everything waiting – even a top class medical team like the kind our Elayna and Alex need – it’s a relief in ways I can’t describe.

Right away you’re greeted by smiling faces and someone asking your name, and who you are.

There are no sideways glances. No judgement. Just an aura of pure joy. It’s people like you, making it all happen out of the goodness of your heart, for little children like mine who you mightn’t ever meet face to face. Alex has this jumper from his time in camp. On the back are two stick figure drawings of a happy camper and a Cara holding hands.

Until Barretstown he’d understandably been a bit hesitant to go off on his own. This time at camp, though, he went to a Superhero Club. He loved it, and today he’s looking forward to going to school!
All he wears are Spiderman, Pokémon, and Pikachu costumes ... and now he chooses that Barretstown jumper as much as those, so we know how much it meant to him.

That’s what I mean about the forever memories you make, in giving. And not just for little ones like Alex. Our Elayna, who will turn 8 in June loved the arts and crafts the most. It just resonates with her – the art is where she really comes alive.

It’s that therapeutic recreation you support... the discovery, and reflection, the ‘serious fun’... that is really like another kind of medicine. It’s healing they carry with them.

In the arts and crafts, Elayna got to make cool new headbands with the Caras and the activity leaders, and she just felt a massive connection to every single staff member she encountered.

If you met Elayna today, you’d see the confidence in her eyes. Your kind support for Barretstown brought that out in her, that feeling she can do anything even despite her illness”.