“Of all the ways we support families living with EB, they tell us emotional support is one of the most important,” Eve O’Donnell. DEBRA Family Support Team.”
Emotional support was the top reason families battling living with EB asked for DEBRA’s help in 2022. Out Family Support Team made hundreds of home visits and calls to families for emotional, practical, financial and medical support.
Will you help families today by donating?
EB patients’ skin is so fragile that it causes painful blisters at the mildest touch and can tear simply by turning over in bed.
We are appealing for funds for items such as antibacterial silk socks, therapeutic cot sheets and pillowcases – in addition to books and feeling cards to help children with EB process their emotions.
Donations also fund respite, counselling sessions for adults with EB, play therapy for children, home visits, home adaptations and specialised EB training for nurses and medical staff.
EB is heart breaking. But the DEBRA Family Support Team brings comfort, hope and resources to children, adults, and families living with EB.
Last year, the team made almost 500 support calls and nearly 60 home visits to patients nationwide.
A further 154 advocacy calls and 24 meetings were organised on their behalf.
Some of these calls related to housing and school issues for families, outreach nursing help and assisting families to secure medical cards.
“You need to be really well to be sick in this country. Applying for help such as medical cards and carer’s benefit involves a lot of time, effort and knowledge.” – Eve.
We are meeting families who are already exhausted and they are having to do this at the worst point in their lives, sometimes dealing with 40-page forms. That’s one of the things we do, we hold their hands and help them, we have the experience and the knowledge to make the path a little bit smoother.
The trauma of managing EB means it effectively becomes a disease of the family – and counselling is offered to siblings and parents.
We are able to make sure that anyone living with any form of EB, and their close ones, can access a range of financial and one-to-one support tailored to their needs.
Your donation means our family support team can be there for frightened, grieving families when they need us most.
Thank you for your donation!
EB takes a tremendous toll on parents every single day. But your compassion today will provide care for children and their families across Ireland.
DEBRA Ireland will be there through every obstacle and challenge. And with your support, DEBRA will always be there… for as long as they need us.
But we can’t do it without you. Together, we can make sure that no family will be left to face EB alone.