Barretstown helps Byrne family reconnect after five-year-old Emily's liver transplant 

As an infant, there was no sign — apart from prolonged jaundice — that Emily had a rare disease of the liver and bile ducts

Pictured at the launch of Barretstown’s Big Picnic are influencer Pippa O’Connor, Dee Ahearn, CEO of Barretstown and Barretstown camper Emily Byrne from Co Waterford. Picture: Conor Healy / Picture It Photography

Emily Byrne loves hip hop. She adores Nathan Carter and George Ezra. She shouts at the TV when Waterford is playing in the hurling and she can’t wait to start big school in September.

“She’s absolutely flying it — the boss of the house,” says the five-year-old’s mum, Ann-Marie, who is expecting her third child any day now.

So you’d never think Emily had a liver transplant at 19 months, by which point she was in end-stage liver failure. As an infant, there was no sign — apart from prolonged jaundice — that she had a rare disease of the liver and bile ducts.

“She was hitting all her milestones. She wasn’t showing signs of this condition — except people said she was very sallow,” recalls Tallow-based Ann-Marie.

Due her routine vaccination at three months, Ann-Marie told her GP she wasn’t happy to go ahead, given Emily’s ongoing jaundice. “The GP wasn’t overly comfortable with her colour either. He referred her for tests.”

At Cork University Hospital (CUH), blood tests showed elevated bilirubin levels. Following ultrasound at CUH, biopsy in Crumlin Children’s Hospital and a procedure at King’s College Hospital, London, Emily was diagnosed with biliary atresia. “She had just a little bit of a gall bladder and bile ducts that weren’t fully formed.”

Sean, Cormac, Emily and Ann-Marie Byrne who were 'blown away' by Barretstown.

In London, Emily had a Kasai procedure— her gall bladder and the damaged ducts were removed, and bile ducts were reconstructed from her small intestine. Unfortunately, the procedure didn’t work. Emily was put on a liver transplant waiting list.

Describing how she and her husband, Sean, were “absolutely distraught,” Ann-Marie says: “We were heartbroken. To have fought so hard with her and now this. She was five months old and couldn’t put on weight. We were watching her deteriorate in front of us.”

Explaining how a family friend, John Fenton, came forward to become Emily’s donor, Ann-Marie says: “We’re so grateful to John. Emily wouldn’t be here without organ donation.”

Barretstown children’s charity has also made a huge difference in the Byrnes’ life, particularly for Cormac, Emily’s six-year-old brother. “Cormac had massive anxiety. He has vivid memories of Mammy leaving many times to go to hospital with Emily. His life was put on hold for two years,” explains Ann-Marie.

The family have been twice to Barretstown. “The children were blown away — by the music, dancing, the crazy golf, being able to roam freely. Barretstown played a huge part in helping us reconnect as a family.”

• Entrepreneur and mum-of-three, Pippa O’Connor is urging everybody to invite friends/family to join them for a picnic during June to raise vital funds for Barretstown — visit www.barretstown.org
• Barretstown offers free, specially-designed therapeutic programmes for children/their families living with serious illnesses.
• The charity wants to support 10,000 children/families for the first time in one year in 2022 — to help achieve this, it's aiming for 10,000 picnics to be hosted across Ireland this month.
• Sign up to ‘Host Your Own’ Big Picnic via www.bradyfamily.ie/bigpicnic and receive a picnic pack, including downloadable resources.
• Barretstown’s Big Picnic annual open day takes place on July 3.