'It’s like poison to him': Seven-year-old Harry from Cork can’t process protein

Harry was born with a life-threatening genetic condition and needed urgent medical attention in Temple Street Children's Hospital  

Lorraine Spillane with son Harry who has Tyrosinaemia Type 1, a rare genetic disorder. 

He’s her ‘Tyrosinaemia trooper’, but when seven-year-old Harry was born Lorraine Spillane never suspected her son had a rare, life-threatening condition.

The sports-mad little boy has Tyrosinaemia Type 1, a genetic disorder meaning he’s missing an enzyme to break down protein. “His body can’t process protein. It’s like poison to him. Without lifelong medication, it would damage his brain, liver and kidney function.” 

Cork-based parents-of-three Lorraine and Kevin feel lucky their child’s condition was quickly diagnosed. With no suggestion of anything wrong – bar low blood sugars at birth – the consultant at CUMH sent samples to Temple Street.

Just days home from hospital and waiting for a routine PHN visit, Lorraine’s phone rang. It was the consultant with a diagnosis. “He said we were to come back to the hospital. He was so reassuring that I naively thought maybe he meant in a few weeks, but he said to stop feeding Harry and to come to the hospital with our bags packed – we were going to Temple Street’.” 

As Harry was being placed in the ambulance a nurse mentioned he was “a very exotic baby” – and Lorraine knew then this was a rare condition. He is only the second confirmed case in Ireland.

Aside from twice-daily meds, Harry’s on a plant-based diet and is allowed very limited amounts of protein. “He has protein-free milk. He’ll often ask for some of his brothers’ milk,” says Lorraine, whose other sons are Niall, 12, and Darragh, 10. 

I measure out 30ml of milk – 1g of protein. It’s a really strict diet – everything he eats has to be weighed.

Harry spent most of his first 18 months in Temple Street and attends every three months for tests. “We consider the staff our second family. Harry adores going up there. There’s a serious side to it all, so for me as his mother, it’s bitter-sweet.”

Describing how Harry “never has a tantrum about food”, Lorraine says she works to instil self-belief in her three boys. It’s why she and Kevin took on the Croke Park Abseil Challenge to fundraise for Temple Street recently.

“The abseil was perfect for showing the boys you can feel the fear, push through your comfort zone and achieve something,” says Lorraine, who pre-pandemic wrote a book, Mum on the Run ( exa.mn/Mum-on-the-Run), also to fundraise for Temple Street, and who’s looking forward to playing traditional games with her boys on Halloween.

• Trick or Treat for Temple Street runs until October 31, with €1 (or more) donation at till in Tesco to support purchasing of Children’s Health Foundation, Temple Street

Tesco/Temple Street partnership

• Tesco Ireland partnered with Children’s Health Foundation, Temple Street in 2014.
• CHI at Temple Street treats more than 147,000 children from across Ireland annually. For many, it’s the only hospital in Ireland where they can be treated.
• Since 2014, Tesco colleagues/customers have raised over €6.5 million for the hospital.
• This has helped purchase over 330 pieces of vital equipment – including CT scanner, EEG system, ultrasound scanners, patient monitors and respiratory equipment.
• If shopping on Tesco.ie, add €1 (or more) donation to CHI at Temple Street or purchase Tesco Temple Street Bouquet, available in stores.