Charity Number: CHY 8703
The Property Race day 2019 will play such a huge part in helping DEBRA Ireland achieve two major goals – (1) to increase awareness of EB and therefore reduce stigma and (2) to ensure families battling with EB have the support they so urgently need.
What is EB?
Children born with EB (epidermolysis bullosa) have little or no collagen which results in their skin being incredibly fragile. The slightest movement or touch can cause blistering which results in massive wounds all over their body.
As this breakdown also occurs internally, eating and drinking causes huge trauma. Painful bandage changes are a part of daily life and can take up to four hours.
The condition is extremely painful and leads to disability and deformity and there is a 75% chance of developing a very aggressive form of skin cancer due to the constant breakdown of their skin.
About the Charity and The project
DEBRA Ireland is a registered Irish Charity set up by a group of parents in 1988 who were living with the devastating news that their children had EB. At that time, there were no facilities for EB in Ireland and families travelled to the UK for treatment. The determination of this small group led to the establishment of EB clinics in Our Lady’s Children’s Hospital, Crumlin and St James’s Hospital.
There are 300 families across Ireland living with EB. Our Family Support Service is exclusively committed to the support and care of all those affected by EB – supporting both EB patients as well as family members. Deirdre Callis (our Family Support Worker) is the link between the charity, the family and the medical team. She visits families at home thus focusing on the needs of the individual and their own EB journey and provides practical help around families accessing grants and specialised equipment.
2016 has been a particularly sad year for the EB community in Ireland with three of our EB superheroes losing their battle with EB. Each one fought a valiant fight but sadly they just weren’t able for the battle that EB presents. It is at times like this that the importance of our Family Support Service becomes so apparent. Deirdre was there to offer her help whenever the family needed it and will be there for them as long as they still need us. Every family member remains part of the DEBRA family whether their superhero is still with us or not.
While these heroes are no longer with us, we must honour their memory. Our focus for 2017, with Property Race Day is to ensure that every child living with EB gets as much care and support as possible through Deirdre and our Family Support Service. Your support allows us to do this.
Thank you to all the team of Property Race Day for choosing DEBRA Ireland as one of their charity partners for 2019. This means the world to our patients and families.