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The doctor told me not to worry, but I knew there was something wrong with my beautiful new baby

Paula Connolly’s daughter Alex was born with CDKL5 deficiency disorder, a rare neurodevelopmental condition. She tells us of the difficulty in getting a diagnosis, the lack of supports available to families and her hopes that research being carried out in TCD will improve care for those affected

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Paula and Alan Connolly with their daughter Alex (25). Photo: Owen Breslin.

Paula and Alan Connolly with their daughter Alex (25). Photo: Owen Breslin.

Paula and Alan Connolly with their daughter Alex (25). Photo: Owen Breslin.

Alex Connolly loves food, going on drives and being out in the fresh air in her wheelchair. She also enjoys swimming and swinging and is a big fan of sensory lights and music, and when she smiles or allows herself to be kissed, it makes her mother Paula’s day.

These are the things that make my heart skip a beat,” says her devoted mum, who has dedicated her life to her beautiful 25-year-old daughter, who was born with a rare, untreatable neurodevelopmental condition called CDKL5 deficiency disorder (CDD).


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