Jack and Jill and Me – Eoin’s Story

Eoin Foley lives in Wexford with his mum Aisling, dad John, and big sister Roisin.

When Eoin was born, things weren’t entirely straightforward. He had a reduced swallow and spent 16 days in the Special Care Baby Unit in Wexford General. At the time, Aisling and John thought this was a short-term hurdle that would pass. “We believed that once this was resolved, everything would be fine,” Aisling recalls.

But as the months went on, it became clear that Eoin wasn’t meeting typical developmental milestones. He had reduced mobility, his eyes didn’t track, and he struggled with rolling and reaching. Although it wasn’t flagged as a major concern at first, Aisling’s instincts told her something wasn’t right. “Having had a daughter already, I knew in my gut that there was more going on, but it never really seemed to be a cause for major concern,” she explains.

The turning point came when Eoin was five months old and began experiencing Infantile Spasms. Aisling remembers those first episodes vividly: “They looked like funny little movements that would start and stop for up to half an hour. Over the next two days they became persistent.” Alarmed, the family rushed him to Wexford General, and from there Eoin was transferred by ambulance to Crumlin Children’s Hospital.

“Looking back, that was when we reached crisis point,” says Aisling. “It felt like we were walking blindfolded through a forest. We were watching every movement Eoin made and had no idea what any of it meant.”

An EEG in Crumlin marked the beginning of a long road to diagnosis. During an initial two-week stay, Aisling and John were overwhelmed by appointments, tests, and the sheer intensity of hospital life. “You have very little privacy to process what’s happening. You’re just trying to absorb the information while your world is changing around you,” Aisling reflects.

After returning to Wexford General for a further month, a nurse suggested a referral to the Jack and Jill Children’s Foundation – a moment that changed everything for the Foley family.

“To be honest, Jack and Jill could not have come at a better time,” Aisling says. “Our mental health was on the floor. Our lives had been turned upside down, and we were still trying to come to terms with Eoin’s diagnosis. In those first few months, he needed medication every four hours. Having Jack and Jill nurses at home to cover the night shifts meant we could finally sleep, knowing Eoin was safe and his medication was being given correctly.”

That simple referral set the family up with support almost immediately. “It made such a difference,” Aisling explains. “We were able to step away from hospital life, get proper rest, and spend time with our daughter Roisin. I don’t think we could have done it all ourselves. Jack and Jill gave us a routine, and some stability in those early, very difficult days.”

Since then, Eoin has faced many hospital admissions, but in the past year the family has finally enjoyed a longer stretch at home together. Despite ongoing complexities, including scoliosis and epilepsy, Eoin continues to do well. He also lives with an extremely rare genetic condition called TUBB3. In fact, he is the only boy in Ireland with this diagnosis – and thought to be the only person in the world with his specific variation of the mutation.

“Eoin is unique in every way,” Aisling says with pride. “He has what I call just one small ‘spelling mistake’ in his genetic story and due to that one tiny thing he has had to face so much. Jack and Jill were there when we needed them most, and I honestly don’t know how we would have coped without that support.”

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