'Abseiling 44 metres in Croke Park is a challenge, but we're doing it for a big cause' - brave mothers undertake charity leap for children with rare diseases

"Rare Ireland does not receive any grants or funding from government agencies and it relies entirely on funds raised and the generosity of donors. Getting access to therapies is always going to be a challenge. The money raised through this fundraising event will go on various therapies from speech therapy to equine therapy to play therapy."

"Parents will take any resources and go on any waiting list. There is a desperation and you want the best for your child in the same way as someone else wants to send their child to an elite school. But there are other parents without a school place for their child and that must be devastating."

Rare Ireland represents 300,000 people across the country living with rare diseases but receives no government grants or funding, depending entirely on fundraised money and donor generosity. Families with children having rare diseases face isolating journeys, diagnostic battles, and challenges accessing therapies. Clare Daly's daughter Jessica has Xia-Gibbs Syndrome, a neurodevelopmental condition. The family paid for expensive private therapy and received financial assistance from Rare Ireland. Fundraising efforts support various therapies including speech, equine, and play therapy. Many families lack school placements and struggle to access resources. Parents desperately seek any available resources and endure long waiting lists to support their children's needs.

Read at Irish Independent