"While the rest of the country and the world was out celebrating St. Patrick's Day and enjoying the parades, our girl Simona was at home on her sofa, unable to leave the house."
"Kamila Demyter moved from Poland to Ireland in 2005, while pregnant with her daughter Simona, and is a co-founder of the advocacy group, Rare Warriors Wexford."
Simona Demyter, a 20-year-old from Wexford, has an extremely rare mutation in the PDE10A gene. Her mother, Kamila Demyter, expressed the challenges faced by Simona, particularly during celebrations like St. Patrick's Day when she remains at home due to her severe disabilities. Kamila moved from Poland to Ireland in 2005 while pregnant with Simona and co-founded the advocacy group Rare Warriors Wexford to support others with rare conditions.
Read at Independent
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