Stella McDonagh dreams her family will soon be able to “run carefree into the sea” on a spontaneous day out in Co Clare. She wants her 11-year-old to worry about “school, friends and sleepovers” rather than “hospital wards, surgeries and dialysis machines”.
For now, her family’s life is structured around haemodialysis due to Alport syndrome, a rare genetic kidney condition carried by her husband Garry Davis and daughter Saoirse.
Four days a week, McDonagh drives Saoirse 3½ hours from their home in Co Clare to Dublin’s Temple Street children’s hospital for dialysis. The treatment takes four hours, and then they drive home.
Most days father and daughter hardly see each other, as Davis has to travel three times per week for dialysis in Limerick.
“Both sick, both exhausted, both fighting the same illness,” says McDonagh. “This is not living.”
Davis and Saoirse are both on the organ transplant list. Davis has had two kidney transplants: in 2004 and 2019. The first gave him 14 years with a good quality of life, he says, but the second was rejected by his body in a turn of events he describes as feeling like “someone hit me with a shovel”.
Successful organ transplants for them would bring about a “new normal” of life without dialysis, says McDonagh.
The family attended an Irish Kidney Association event at Dublin’s Mansion House on Wednesday, raising awareness of the importance of organ donation.
The association is calling for “urgent action” as donations have fallen to its lowest level in five years. There were 202 organ transplants conducted last year – a significant decline on the pre-pandemic yearly average of 282.
This is despite the Human Tissue Act of 2024, shifting organ donation to a scheme people are automatically opted into, with those wanting to opt out having to expressly register that preference.
Speaking at the event, HSE chief clinical officer Colm Henry says Ireland does not compare well with other countries when it comes to organ donation. Transplant rates have fallen, particularly since the pandemic, he says.
A double lung transplant came at the 11th hour for Irene McGrath (54) from Clasheen, Co Cork, who had been receiving palliative care after suffering for about a decade with a rare autoimmune disease called scleroderma, which caused scarring to her lungs.
Diagnosed in her late 30s, she says the condition got progressively worse to the point she could not breathe on her own; she required full-time oxygen therapy for 3½ years.
“In the end I couldn’t get out of bed and couldn’t even turn in the bed without losing my breath. It was transplant or die … I was literally being sent home, it was palliative care because my condition had gotten so bad, but they found a match and I was saved,” she says.
Double lung transplant recipient Irene McGrath from Glasheen in Cork. Photograph: Nick Bradshaw
Standing in the sunshine outside the Mansion House on Wednesday, McGrath looks a picture of health and says she feels “blessed” and “grateful” for the lungs she received five years ago.
“It was a gift to me … I’m back to work, back to the gym, back on holidays, back playing sports. Everything is great. Life is great,” she says, adding that she hopes people will talk to their family members about organ donation.
Jayne McHugh (37), from Co Galway, carried a donor card and made her wishes clear to her family from the age of 16. She died two years ago after suffering an unexpected brain haemorrhage. By donating her organs, she changed four people’s lives.
“It wasn’t our decision to make,” says her mother, Mary McHugh. “Jayne had already made it. We were able to carry out her last wishes.”
Mary McHugh and Mike Kenny from Galway, whose daughter Jayne donated organs to four people when she died. Photograph: Nick Bradshaw
The eldest of five siblings, Jayne McHugh was “energetic” and “kind”, with a “great sense of humour” and a love of animals, says her sister Aoife Kenny.
There are “two sides” to organ transplants, Kenny says: “It is going to be somebody’s worst day and somebody’s best day. Unfortunately for ourselves it was the worst day, but we know that it was the best day for four people.”