Kathleena Clancy turned 3 in December. She was born with EB which means certain parts of her body can blister easily and her skin needs to be bandaged. Mum Tina spoke to Thomas Lyons from The Anglo Celt about Kathleena joining their family in 2018.
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.
We are getting closer to a treatment for EB. A team of Irish gene therapy researchers have made a breakthrough in the search for a cure for one of the worst strands of EB. Read about it in the Independent.ie
Maria and Barry spoke to The Irish Times about the heartbreak of losing two babies to EB but also the immense love they had for Lola and Luca and how they want to keep helping other families affected by EB.
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