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.

To support families like Maria and Barry, please Text BUTTERFLY to 50300 to donate €4 to DEBRA Ireland or donate here

(Text costs €4. DEBRA rec min €3.60. Service provider: Like Charity. Helpline 0766805278)