From a whirlwind year for Maurice Barron and his family, there is one memory – ‘a real princess moment’ – that brings a smile to his face. The Waterford native and UCC alumnus beams as he recalls watching his four-year-old daughter, Ava, ascend the stairs of the Entrance Hall at the White House as a guest ahead of President Biden’s State of the Union Address. According to custom, the Marine Band waits for the first guest of the night to arrive before they start playing – and, as that guest was Ava, her entrance sparked the beginning of the event’s musical fanfare.

"The Marine Band started to play, and everyone stood to attention," says Maurice, "and Ava ran into the middle of the room and started dancing!"

There aren’t many four-year-olds who can say they got a hero’s welcome at the White House, but when you learn of the depths of Ava’s bravery, you realise there was no one better suited to the occasion.

The daughter of New York-based Maurice and wife Kandice, Ava was just one when she was diagnosed with a malignant rhabdoid kidney tumour – a rare form of cancer with a survival rate of around 8 percent for a child of Ava’s age. While Ava underwent an intensive course of treatment at Memorial Sloan Kettering Cancer Center (MSK), her parents looked for stories of hope to help them through their darkest moments. It was during that time that Maurice and Kandice discovered the memoirs of President Biden and his wife Jill, and their accounts of their experience during son Beau’s cancer journey.

"[President Biden] was so willing to speak about it, so willing to talk about how he felt and this false idea of what being a 'tough guy' is. You realise very quickly that those aren’t true," says Maurice.

"If you want to see a tough guy, watch a parent who pushes a stroller into the paediatric cancer ward at MSK every day – that’s probably the toughest person you’re ever going to meet."

The Bidens’ story had a profound impact on Maurice and Kandice, and when Ava’s health began to improve Maurice wrote to the President and First Lady to thank them. Biden was so touched by Ava’s story that he invited the Barrons to the relaunch of the Cancer Moonshot initiative (aimed at reducing the death rate from cancer by at least half over the next 25 years) as well as the State of the Union Address, in February. While Ava stayed in the White House’s movie theatre room – flanked by secret service agents, Maurice and Kandice attended the Address as guests and watched on as President Biden said of Ava’s story:

"For the lives we can save and for the lives we have lost, let this be a truly American moment that rallies the country and the world together and proves that we can do big things."

For Maurice and Kandice, it was an incredible moment – not just to see their daughter honoured in this way, but to have her story – one of hope – shared on a global level.

"Since Ava was diagnosed in April 2020, our Oncology team at MSK has seen five other kids with the same type of cancer – Ava is the only one of those kids alive today," explains Maurice.

"The one thing we said when we were going through this – because we couldn’t find a story of a child who had done well off of this – is if she somehow gets out of this, we would tell her story to everybody who will listen.

"Ava is only four years old, all she does is bring love into the world – the world would be a different place without Ava. You’re never going to be able to solve every childhood cancer, but what if you can save another 10 or 20 Ava’s? Think about how much better the world becomes because of that. And that’s the kind of message we want to put out there."

Maurice never anticipated that his correspondence with President Biden would spark such a chain of events; but, then again, the Kilmacthomas man is living a life that is a million miles away from what he had ever imagined. Upon entering UCC in 1999, he studied Commerce before undertaking a postgraduate degree in Electronic Commerce and Business. Like many ambitious graduates, Maurice moved to New York in 2005 with the intention of staying ‘for a few months’ – 18 years later, and he is now a US citizen, happily settled in NYC with his family.

A founding member of Manhattan Gaels GAA, Maurice is firmly connected with the Irish diaspora in New York – including, of course, fellow UCC alumni.

"I’ve come across plenty of them," he says. "People look out for each other. What we find a lot here – especially with, say, the Irish Network or Digital Irish – is if somebody sees you’re a UCC person, they always know to reach out."

Now Senior Vice President for Data and Platform Solutions at Zenith, part of the Publicis Groupe and the second-largest advertising agency in the world, Maurice is thriving in a career that he is clearly passionate about. He is still excited as he recalls being part of the Publicis team that made a winning billion-dollar pitch to Disney.

"You were competing against the guys with the MBAs, the Harvard guys. What I found was, if you knew your stuff and you had that ability to tell a story, and do it in a really fun way, that was the key," says Maurice.

The future looks bright for the Barrons. Ava, who is almost finished her first year of Pre-Kindergarten, is ‘doing amazing’: "If you were to look on a scale of where the worst possible scenario is, and the best possible scenario is, we’re pretty close to being in the best possible scenario.

"We often say to Ava, she’s a 'well' kid – versus a 'sick' kid. A 'well' kid generally means you’re out of the chemo cycle, you’re out of the frontline treatment."

Maurice and his family will continue to advocate for childhood cancer research, working with organisations and families to make a positive difference. As well as being a part of the Bidens’ Cancer Moonshot initiative, the Barrons are also linking in with Irish organisations regarding a neuroblastoma vaccine trial at MSK. There is also some much-deserved quality family time on the cards for next year in the form of a trip to Disney’s Aulani resort in Hawaii, with the Make a Wish Foundation.

"The one thing you learn when you’re going through treatment is, the next day is not promised, and you have to live for those moments where you can," says Maurice.

"We understand that our situation could change – Ava is a lot more vulnerable than most kids; it could come back. All those things are worries for us, but you must try and live every day to the full – so that’s what we’re trying to do, as much as we possibly can.

"It’s a weird thing to say, as someone whose child has battled such a rare and deadly form of cancer, but I’m probably the luckiest person you’ll ever meet. And my wife and I understand how lucky we are."

Photography: via Maurice Barron