Their distress was made all the more painful by the fact they were completely alone without the support of their family, having had to travel from Dublin<\/a> to the UK<\/a> in order to get surgery in a bid to save his life.<\/p>\n They rang their parents, who were minding their three-year-old daughter Eithne at home, and asked them to bring her over \u201cto say goodbye to her little brother\u201d.<\/p>\n \u201cFlights were all booked up that day so they had to wait a day to come over,\u201d Ms Sheehy says. \u201cThe ICU team were able to stabilise him overnight so they were able to say goodbye to him when he was alive. But it could have been very different.\u201d<\/p>\n When he was six weeks old, Ailbe was diagnosed with HLH<\/a>, a condition in which the immune system becomes dangerously overactive, causing widespread inflammation, organ damage and failure.<\/p>\n But that wasn\u2019t the only piece of bad news they received that day. They were told Ailbe needed a stem cell transplant<\/a> \u2013 the replacement of unhealthy blood stem cells with healthy ones \u2013 but that the procedure is not available in Ireland and they must travel to the UK instead.<\/p>\n Speaking publicly to call on the Irish State to offer the procedure to patients like Ailbe, they describe the current system as \u201cdysfunctional\u201d, adding that it has added to their trauma as they grieve their \u201cbeautiful little boy\u201d.<\/p>\n Following his diagnosis, Ailbe was transferred to Crumlin hospital<\/a> where he stayed for six weeks for treatment. He was in \u201ccomplete isolation\u201d and strict visitation rules were in place.<\/p>\n Ms Sheehy says his illness meant he was \u201cincredibly immunocompromised\u201d and \u201cany exposure to infection\u201d could lead to a life-threatening deterioration in his condition.<\/p>\n He was released home for two months, as his parents prepared to bring him to Britain. The costs would be covered under the HSE<\/a>\u2019s treatment abroad scheme, but the logistics, his parents say, were up to them.<\/p>\n This, they add, was the last thing they needed when they were already concerned about his wellbeing.<\/p>\n After prolonged consideration, they eventually decided taking the ferry would be the safest method of travel as it would \u201climit exposure\u201d to other people when compared to a busy airport and flight.<\/p>\n But throughout this process, they also had to consider their daughter Eithne, who couldn\u2019t stay in the UK with them as Ailbe would be once again under strict rules of visitation.<\/p>\n \u201cWe were lucky in that we were in a position that Diarmuid\u2019s mother and my parents were able to take on the childcare. Now, they are older, and it was incredibly stressful for them to take on a three-year-old for two months,\u201d Ms Sheehy adds.<\/p>\n [\u00a0Moving children\u2019s stem cell transplants to Ireland would \u2018ease burden\u2019 on patientsOpens in new window<\/a>\u00a0]<\/p>\n Ailbe underwent chemotherapy in Newcastle in July and on August 1st, received his stem cell transplant. He was doing quite well in the immediate aftermath of the operation but \u201cthings went south\u201d at the end of that month.<\/p>\n On August 25th, Mr Carter was flying with Eithne back to Ireland, having brought her over to the UK for the weekend. That same day, Ailbe was admitted to intensive care due to breathing issues.<\/p>\n Mr Carter decided to fly back that night \u201cjust in case\u201d as Ailbe\u2019s medical team were growing increasingly concerned.<\/p>\n \u201cI was going through security when Aileen rang. I knew things were in a really bad situation. Then the security person at the airport told me to get off my phone because I can\u2019t be on my phone in that area,\u201d Mr Carter says.<\/p>\n \u201cI had no idea what the situation was going to be when I landed. I remember that flight coming into Newcastle, constantly refreshing my phone hoping for a bar so I could get a message because he literally could have died while I was up in the air.\u201d<\/p>\n The three of them were reunited in the hospital. Ailbe had another setback in the middle of the night, but he pulled through.<\/p>\n He appeared to be recovering well for the next two weeks, but on September 9th, they discovered a bleed in his lungs, a complication of the transplant.<\/p>\n \u201cThat\u2019s when the loneliness sets in; you\u2019re away from your family, you\u2019re away from your friends, you\u2019ve no support network. Your daughter is in another country with other people and you want to be together as a family but you can\u2019t,\u201d Ms Sheehy says.<\/p>\n Mr Carter adds: \u201cYou\u2019re on a knife-edge the whole time.\u201d<\/p>\n They were relieved when their family arrived the following day. \u201cWe really needed family over at that point. We couldn\u2019t take the tube out without them,\u201d Mr Carter says.<\/p>\n But for his grandparents, Ms Sheehy acknowledges it must have been difficult. \u201cThey saw a little healthy boy leaving for Newcastle and the next time they got to see him he was tubed up and they were saying goodbye.\u201d<\/p>\n Ailbe died on September 10th. This created a new set of concerns for the family, such as how they would get him home. <\/p>\n They say there was no support from Irish officials, and instead they benefited from the charity Kevin Bell Repatriation Trust, who they describe as a \u201clifeline\u201d.<\/p>\n Despite the charity\u2019s help, they struggled with having to organise a death certificate in the throes of grief while in an unfamiliar city and navigating an unknown system.<\/p>\n They also declined an inquest, as that would have required Ailbe\u2019s body going to Scotland and staying there for a further two weeks.<\/p>\n While the family understand the outcome is unlikely to have changed if the surgery was done here in Ireland, the issue, they say, is the additional stress of having to travel when their son was unwell and again when they were grieving his loss.<\/p>\n Crumlin\u2019s children hospital currently has stem cell transplant service for children with leukaemia, but there is no such service for children with immunological conditions. They generally travel to Great North Children\u2019s Hospital in Newcastle for treatment.<\/p>\n In February 2023, the Health Information and Quality Authority<\/a> (Hiqa) published a review on the use of international stem cell transplant services by HSE for children.<\/p>\n It found the HSE, on average, would have sufficient bed capacity to accommodate patients currently treated in the UK and estimated that repatriating care for these patients could \u201clead to cost reductions for the HSE\u201d.<\/p>\n [\u00a0Childhood cancer: \u2018I had this thing in my head that, until somebody tells me, it\u2019s not real\u2019Opens in new window<\/a>\u00a0]<\/p>\n However, the service would rely on recruitment of additional staff \u201csuch as skilled nursing staff and support staff, across a range of disciplines\u201d.<\/p>\n Between 2015 and the start of December 2025, a total of 109 children travelled to Britain for paediatric hematopoietic stem cell transplant surgery, according to figures released in response to a parliamentary question from Labour\u2019s health spokeswoman Marie Sherlock<\/a>.<\/p>\n The number has increased in recent years, though figures vary annually, with the number doubling between 2024 and 2025 from 12 to 24.<\/p>\n Ms Sherlock said the HSE asked Hiqa to commission this assessment and questioned why, almost three years later, there has been \u201cno action\u201d.<\/p>\n \u201cThis is just a heartbreaking story. We have children here who are needing surgery but are being forced to travel,\u201d she added.<\/p>\n![\"Ailbe](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2026\/01\/BCXZ6ARV3FEFLKRN7GZ5H5QQ2M.jpeg\")
Ailbe Carter <\/p>\n![\"Aileen](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2026\/01\/JU3R556S6BD2HK6SYHH42BZUDY.JPG\")
Aileen Sheehy and Diarmuid Carter with their daughter, Eithne. Photograph: Chris Maddaloni <\/p>\n![\"Ailbe](\"https:\/\/www.europesays.com\/ie\/wp-content\/uploads\/2026\/01\/74NHTF5DHZCTDN3JIB2XF7YBSQ.jpeg\")
Ailbe Carter, \u2018the sweetest little boy\u2019 who was \u2018full of smiles\u2019 <\/p>\n