An Irish Mothers Significant Contribution To Medical History

Unlocking of The First Treatment For Rare Disease PKU

The Leitrim Historical Society are delighted to welcome Bernadette Gilroy, Chairperson PKU Association Ireland (PKUAI) to present a public lecture on Leitrim lady Mary Rooney Jones (1917 – 1981) who fought fearlessly for medical treatment for her daughter.  It was because of Mary’s persistence for care, that the first treatment for Phenylketonuria (PKU) was discovered.  The lecture, open to all members of the public will take place in Bee Park Resource Centre on Tuesday 21st June, 2022 at 8pm

The lecture will celebrate the life of Mary Rooney Jones and International PKU Day which takes place 28 June 2022.  The talk will present the moving, heartfelt and heroic story of Irish woman Mary Rooney Jones, originally from Pollboy, Manorhamilton and her fight for her daughters care.  It was this mother’s tireless persistence seeking medical care for her daughter, Shelia Jones, which triggered medical pioneers Dr Bickel, Gerrard and Hickman to look for a treatment.  

Shelia was born in Birmingham in 1949, before the beginning of newborn screening. At 17 months old, she was diagnosed with phenylketonuria (PKU).  In 1951, when Sheila was diagnosed, PKU was an untreatable disorder that caused profound intellectual disability. Most affected individuals required long-term care from an early age.

What is PKU? PKU is an inherited metabolic disorder that prevents the normal breakdown of phenylalanine, an amino acid found in food and milk. If not treated, this can lead to a toxic build-up of phenylalanine in the blood, which can cause severe brain damage. 

Ireland was the first country in the world to begin a national screening programme for PKU, treating patients with the rare metabolic disease from birth from the introduction of the National Newborn Screening Programme in 1966. 1 in 4,500 babies born in the Republic of Ireland has PKU, one of the highest national occurrence, globally.

Mary Rooney was born in 1917 and grew up in a farming community in the northwest of Ireland. The economic circumstance in Ireland at that time provided no paid work in rural areas, and so Mary was forced to leave home to find work.  World War II created a need for labour in England, and Mary arrived in Birmingham in 1942/3.  This was the start of a very different life for her and she would live in poverty all her life.

Sheila Jones was born a strong, healthy and well-nourished baby on 2 October 1949.  It soon became clear to her mother that Sheila was not developing normally like her two older brothers; and this was when she began to seek answers and an explanation for her daughters deteriorating health.

In 1951, when Sheila was diagnosed, PKU was an untreatable disorder that caused profound intellectual disability. Most affected individuals required long-term care from an early age. Although the possibility of treatment with a diet had been suggested, no such treatment existed.

It was from this date that Mary Rooney Jones began her fearless journey to seek help for her daughter.  Her courage and determination persuaded the team of pioneering doctors at Birmingham Children’s Hospital to find a treatment for her daughter.

Gerry Creamer Chairperson Leitrim Historical Society, speaking about the lecture said ;“We are delighted to welcome PKUAI chairperson Bernadette Gilroy to celebrate the life of the remarkable Leitrim woman – Mary Rooney Jones.  The lecture will give an insight into the life of a mother fighting on her own for her child’s health and life.  Our aim from the lecture is not only raise critical awareness for PKUAI and Mary’s courage, but also help us fundraise for a plaque/ monument (in the town) to honour Mary’s memory and contribution to PKU”.

Bernadette Gilroy, Chairperson, PKUAI and key speaker at the event added “I am honoured to  represent the PKU community of Ireland at the Leitrim Historical Society event celebrating the incredible story of local Leitrim mother Mary Rooney Jones and her daughter Shelia Jones,  the first child tested with dietary therapy, of Irish descent, to be treated by Dr Bickel.  I have no doubt this is a story many people will find truly compelling and identify with, as many parents continue to fight to this day for their children’s access to healthcare.  The PKUAI are delighted to be part of this amazing celebration for Mary Rooney Jones and encourage people to attend the lecture”.

Leitrim Historical Society was formed in 2013 to collate the history & heritage of the town and surrounding areas, and has been involved in many projects including; World War1, , Commemorating 1916, Commemorating the closing of the SLNCR Railway in 1957 soon to be reopened as the Sligo-Enniskillen greenway and collated the history of every house in the Town.

For event tickets contact: Gerry Creamer T: 0863855090