Our 30 Year Journey
The seeds of DEBRA Ireland are sown…
In 1988 a group of frustrated families gathered around a kitchen table. Their children were living with EB and there was no support. None of the maternity hospitals had heard of EB; let alone how to treat it. So, in the true pioneering spirit of our families, they formed DEBRA Ireland.
Derick O’ Neill, Emma Fogarty, Jimmy Fearon, Anna O’Neill and Pat Fogarty
Some of our founding members
Val and Maria Fynes, Jean and Donal Boylan, Michael and Grainne Griffith and Margaret and Peter Bannon were instrumental in the setting up of DEBRA Ireland.
Val and Maria Fynes‘ led the charge after their son Aaron was born with EB in 1985. Through grit and determination they travelled to the UK to attend hospital appointments. It wouldn’t have been unusual to see Maria driving across Ireland to visit a family with EB to share her bandages and approaching media outlets to tell the DEBRA story.
Michael and Grainne Griffith who have been instrumental from the start, ensured the funds raised reflected with families wanted – research. There was little known about EB and families needed answers – to at least understand how and why children were being born with EB.
Subsequent to this activity, after their daughter Olivia was born with EB in 1977, Margaret and Peter Bannon put an ad in a paper asking families to contact them if they had heard of EB or a child with EB. This is how families began to connect. Funds raised went into EB research and the setting up of the paediatric service in Crumlin’s Children Hospital.
These are only four families out of our original founders. Although many of our founders have lost a child to EB all of them continue to still be involved.
Michael and Grainne Griffith
In January 2019 some of founding families met up at our 30th birthday celebrations. A common phrase was “we have passed the baton to the next generation”. 30 years ago families had to travel to the UK to receive support and now in Ireland we have a national paediatric and adult service; an EB outreach nurse and a family support team.
Deirdre Callis and Maria Fynes
We will never forget where we came from and will honour our founding families by keeping the patient voice at the centre of everything we do. We will not let the EB community down as we strive to improve the lives of family living with EB.
Celebrating with EB family members at our 30th birthday event