“Families with seriously sick children are living in constant state of anxiety, uncertainty, and exhaustion, often unseen and rarely highlighted” says Impact Report from Cliona’s Foundation: 52% of families were forced to borrow from friends and families to meet the additional costs, with almost 20% of families accessing loans from financial institutions to fund the additional expenses.
Since its establishment in 2008, Cliona’s Foundation has distributed more than €3.25 million and has helped more than 1,600 families across 31 counties. Over these years, the funds have been used in various vital ways to alleviate some of the non-medical related financial stress that comes with caring for a seriously sick child- transport and car park costs, utility bills, accommodation, food, rent, to name only a few.
However, despite our efforts, our 2024 survey confirms that families continue to struggle with escalating non-medical related costs.
Survey findings highlight that costs far outstrip any, if available, support from the state, and that many families are being forced into further debt to bridge the gap. Incurring additional debt creates a further layer of anxiety for families already struggling to come to terms with their new reality.
Our survey also underscores the profound emotional toll on relationships that caring for a sick child can have. It confirms that in many cases the emotional toll on relationships have caused them to fall apart. In other cases, relationships are being pushed to breaking point as a combination of financial pressure and social exclusion that comes from withdrawing from the workplace or social gatherings, which slowly erodes the fabric of relationships.
However our survey findings also offer hope. It is a validation of the work that Cliona’s Foundation have been doing for almost 20 years, with many survey respondents celebrating the transformative effect support from Cliona’s Foundation has had on their family situation. Over the course of 2024, we successfully disbursed €540,000 to over 216 families. Respondents have highlighted improvements in mental health, in their happiness levels, and in their ability to cope.
One family surveyed spoke of the relief the financial support Cliona’s provided to them
“We dropped half our income due to Lily’s illness. It gives huge relief from the financial worry. It gives a cushion for unforeseen costs that can’t be deferred, for example our car has just broken gone in for repairs after a breakdown at the weekend. It means life continuing as normal as possible and being able to afford to be at home with Lily”
The needs continue to outpace the available resources. Since 2018 after the publication of our report “Too Dear To Visit” we have been calling on the government to establish a grant system that would recognise the particular challenges that come with looking after a seriously sick child. Cliona’s have outlined a pathway to Government support in their 2025 Pre-Budget Submission
Such a fund needs to be adequately resourced, predictable and sustainable. Cliona’s Foundation have also proposed an innovative model of funding that would see the state provide ‘match- funding’ (where the state would match the funds raised by Cliona’s foundation) through a fund administered and managed by Cliona’s Foundation, allowing greater efficiencies and ensuring the expertise and knowledge accumulated over almost 2 decades is maximized.
Every year 400 families in Ireland receive the devastating news that their child has a serious illness or condition that will fundamentally change the day-to-day life of that family. Sadly, approximately 400 children will succumb to these illnesses annually. During the course of that illness, these changes are costly and are having profound impacts on families, their mental wellbeing, and their relationships.
Previous studies conducted by Cliona’s shows how families with sick children are often disproportionately affected by situations out of their control, such as rapidly increasing living costs. These are parents who are in a living nightmare and the last thing they should have to worry about are bills. Cliona’s survey found that in 70% of families, at least one parent must give up their jobs to care for their sick child leaving them struggling to cope. Studies have highlighted that a family will need between €10,000 and €15,000 a year to cover various non-medical costs while their child is ill.
But yet, most of these impacts are unheard and unseen, and families are left to struggle through, dependent on what small support they can secure from the state, or from Cliona’s foundation.
Greater government intervention is essential. We will continue to lobby the government for systemic change that will ensure ongoing support for families, while continuing to work with people across Ireland, to raise the funds that will allow families to give their child the attention and care they so badly need.
Speaking about the importance of highlighting of the struggles these families experience, was Cliona’s Founder Brendan Ring. “So many of these families experienced, and continue to experience, the significant non-medical costs of caring for a child with a life-limiting condition. Through this Impact report we aim to raise awareness of the often unseen challenges facing the entire family unit during a child’s illness and to appeal for more support to help us on our mission to do more for them.”
