Palliative care helps young Eva live fully in Ireland
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In Dublin, Ireland, Emiliya Joseph and Sanju Jose are caring for their four-year-old daughter, Eva, who receives palliative care for a rare neurological disorder.
Eva was born in November 2021 and began showing developmental delays around three months old. Diagnostic tests revealed she has AKT3 megalencephaly-polymicrogyria-polydactyly-hydrocephalus syndrome, a very rare brain disorder caused by a spontaneous genetic mutation. Initially, Emiliya worried that palliative care meant giving up on her daughter, but Dr.
Fiona McElligott at Temple Street hospital explained the focus is on maximizing quality of life and providing support. Eva's family found that this approach improved both her wellbeing and their own, allowing her to return to preschool after a period of illness and hospital stays.
Healthcare professionals from Temple Street, St Francis Hospice, LauraLynn children’s hospice, and Jack and Jill nurses collaborate to provide Eva with comprehensive care, including medical support, music therapy, and constant access to advice for her parents. Emiliya emphasizes the importance of having someone available to answer questions and support their decisions while allowing them to enjoy each day with their daughter.
