Wexford Mum Raising Funds to Bring Son with Rare Condition to World Specialist Conference in Seattle

A Wexford mother is sharing her family’s story as she works to raise awareness and support for her three-year-old son living with a rare genetic condition.

Amy Mahood’s son MJ has 1p36 Deletion Syndrome, a complex chromosomal disorder that affects development, speech, mobility, and can cause a range of medical challenges including seizures and feeding difficulties. While the condition is rare, its impact varies widely, with many children requiring ongoing specialist care and therapies.

Amy says MJ has “defied all odds” and continues to make progress despite significant health challenges. She is now fundraising to bring him to an international 1p36 specialist conference in Seattle this July, where leading experts will gather to share research and guidance on the condition.

The trip is seen as an important opportunity for Amy to access specialist knowledge that she can bring back to Ireland and share with MJ’s care team, including his paediatrician in Wexford and specialists at Children’s Health Ireland in Crumlin.

A Family Fun Day will take place on Friday 5th June at St Mary’s Maudlintown, Wexford, with all proceeds going towards the trip.

Amy also documents MJ’s journey through her Facebook page, “1p36 MJ and Me,” where she connects with families around the world affected by the same condition.