Last year we held our second family weekend in Barretstown, Co Kildare. Families from all over Ireland and the UK living with EB came together for a fun-filled weekend where they spent time with other families living with the condition.
Respite from the challenges that EB brings is so important to those living with and caring for someone with EB. EB stops for nobody. Bandage changes can take between 3 to 5 hours every second day and usually it’s mum or dad who are the ones doing the dressing changes.
Events like Barretstown allow our families to take a break from EB and enjoy quality time with their children.