All EB families have access to apply for a number of grants under our Family Support Service. These grants range from respite grants, hospital grants, emergency grants and equipment grants. Despite funding being unpredictable, we remain committed to our families keeping their needs at the centre of our priorities.
DEBRA Ireland offers an annual Respite Grant to families living with EB. Being a life limiting condition there is a need for patients to avail of personalised respite grants appropriate to their medical and social needs.
Here two of our families talk about the importance of the respite grant to them:
“The grant helped me to afford to bring my children on a holiday they will never forget. My princess Casey got to meet her favourite Disney Princesses in Disneyland Paris. Being away allows you not to worry or think of the impact of daily life with EB for a short while” Rachel Connors, Mum of Casey, Dublin.
“Our grant went towards the costs incurred during Liam’s continued hospital admissions; particularly in the last year. It gave us the opportunity to stay with Liam during these difficult hospital admissions. On other occasions, we used the grant to take a small break or even go out for a meal. These were the times we got to make memories with Liam, which is something we will now treasure forever.” Grainne Hagan, Mum of Liam who passed away in October 2016, Co Monaghan.