A Sculpture for Mary Rooney Jones & Sheila Jones

Honouring 60 Years of Newborn Screening in Ireland

Some of the most transformative moments in medical history begin not in research laboratories or government chambers, but in the hearts of determined parents.

Mary Rooney Jones was one such parent. A mother from Manorhamilton, Co. Leitrim, Mary's daughter Sheila was diagnosed with Phenylketonuria (PKU), a rare inherited metabolic condition at a time when no treatment pathway existed. Rather than accept that reality, Mary became an extraordinary advocate: a woman who fought, with quiet ferocity and unwavering love, for access to a treatment that could protect her daughter's health and future.

Her perseverance was an instrumental catalyst in the establishment of newborn screening in Ireland in 1966 a programme that has since saved and transformed countless lives across this island and inspired similar programmes worldwide. When we consider that rare disease is always a family affair, touching parents, siblings, and entire communities across generations, the ripple effect of Mary's courage extends to millions.

2026 marks the 60th anniversary of newborn screening in Ireland.

To honour this milestone and the woman whose love helped make it possible we are raising funds to erect a permanent sculpture representing Mary Rooney Jones and her daughter Sheila on the hospital grounds in Manorhamilton, Co. Leitrim. This monument will stand as a lasting tribute to the power of advocacy, the bond between a parent and their child, and the extraordinary difference one determined person can make in the landscape of rare disease care.

The sculpture will carry a QR code representing three charities that continue Mary and Sheila's legacy today:

The PKU Association of Ireland, Rare Ireland and The NSPKU (National Society for PKU, UK). Any surplus funds raised beyond the cost of the sculpture and official opening will be donated equally between these three organisations, directly supporting the families and individuals living with PKU and rare disease today.

This monument is for every family who has ever been told there is no treatment and refused to believe it. It is for every parent who fought. And it is for Sheila, the child whose diagnosis changed the world.

Please donate, share, and help us ensure that Mary Rooney Jones and Sheila take their rightful place in the history of rare disease in Ireland and the world.