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.
DEBRA Ireland Patient Ambassador Emma Fogarty was the recipient of a Courage Over Adversity Award at the Hidden Hearing Hidden Hero awards ceremony on Monday 5th September. Her mother Pat was nominated for Unsung Hero for her work caring for Emma.
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