Casey Connors (7) was born with recessive dystrophic EB. The worst form of EB you can live with. Mum Rachel spoke to the Irish Independent about how Casey copes with EB now that she has started school.Read More
We spoke to Alana’s mum Rachel Reid, about daughter Alana who was born with EB:
In the days before Alana was due to start pre-school her dad Greg, Caroline (Alana’s care assitant) and I went to meet her new teachers to discuss EB. We also checked the toys, removed anything unsuitable, checked chairs, toilets, outdoor area, etc. I had her new school jumper made into a V-neck so it can be easily put on/off without causing blisters. I covered any seams that could potentially cause any friction. I also dyed t-shirts to match the uniform as she cannot wear the polo shirt and panicked there was lots of panicking.
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.
Our family support service continues to offer emotional, practical and financial support to families living with EB.Read More