A Laois Mum is raising awareness of organ donation in children, a difficult topic for many to think about.

Rathdowney mother of two Grainne Fleming (née Duggan) has asked parents to consider donating their child's organs, should the unthinkable ever happen.

Her seven year old daughter Aoife Fleming is a patient on Ward 23, in the Cardiac Heart Unit at The Freeman Hospital in Newcastle, where she is urgently awaiting a lifesaving heart transplant. 

Aoife is on a European-wide waiting list for a heart, and is constantly hooked up to a BiVAD machine that pumps her heart for her in the meantime.

Pictured: Parents Grainne and JJ with their daughters Orlaith (aged ten) and Aoife (aged seven)

Grainne and her husband JJ lived with their two children Orlaith (ten) and Aoife (seven) in Ballydesmond, Co. Cork. When Aoife's health took a turn, she was relocated to the Freeman Hospital in Newcastle.

Grainne and JJ have relocated to the UK to be closer to Aoife, where they both work remotely. The pair work morning and evening shifts in turn to rotate their time with Aoife at the children's hospital.

The family are waiting and praying for a suitable heart that has the power to save Aoife's life, amid critical shortages in organ donations.

"Aoife wasn't diagnosed from birth, she got pneumonia as a baby and was admitted to UH Kerry. On the day we were released to go home, there was a locum from Limerick doing final checks. He asked if anyone had ever listened to her heart, and realised that something was wrong," Grainne told the Leinster Express / Laois Live.

Pictured: Aoife Fleming is in the Freeman Hospital, Newcastle awaiting a life-saving heart transplant

"We assumed it was just a heart murmur, and went to a follow up appointment in Limerick. We were then told to go straight to Crumlin," she said.

Aoife was diagnosed in 2019 with severe Dilated Cardiomyopathy (DCM), a condition that weakens the heart’s ability to pump blood. Under the fantastic care of the cardiac team at Crumlin Hospital, she was able to enjoy an active childhood, spending time with her ten year old sister Orlaith, dancing, and taking part in gymnastics and stage school.

In September 2025 Aoife’s condition deteriorated rapidly, and her heart began to fail. Her parents were confronted with the unimaginable: their daughter’s life was in critical danger.

“Watching machines take over the job of your child’s heart is terrifying, humbling, and awe-inspiring all at once, but it represents hope when all other options have been exhausted," Grainne admitted.

Aoife was admitted to Crumlin ICU and placed on an ECMO (Extracorporeal Membrane Oxygenation) machine, a form of life support that temporarily takes over heart and lung function. The next step was her transfer to the Freeman Hospital in Newcastle.

Pictured: The close-knit family with Rathdowney and Ballydesmond roots

During this time, Aoife suffered a cardiac arrest, but thanks to the skilled doctors and nurses at Crumlin Hospital, she was saved with CPR.

On October 27, Aoife was transferred to the UK via a specialized Swedish ECMO team. Due to safety regulations, her parents could not accompany her.

While waiting anxiously to board their flight, her parents received the news that Aoife had arrived safely over to the UK and they were reunited later that night in Newcastle.

"Every day is a challenge. Aoife faces needles, wires, and machines, all while being separated from her family and friends especially her big sister Orlaith. Yet she remains remarkably brave, smiling through fear and uncertainty," Grainne said.

At the Freeman Hospital, consultants recommended Aoife be fitted with a Bi-Ventricular Assist Device (BiVAD), known as the Berlin Heart.

This mechanical device now does the work of her failing heart, pumping blood in and out of her body to sustain vital organs. While it is not a cure for her condition, it is a lifeline, buying Aoife precious time as she waits for a heart transplant.

“As a parent, nothing prepares you for the reality of watching your daughter wait for a heart transplant far from home," the Mum of two explained.

Pictured: Aoife was delighted with a visit from Santa Clause to the ward last Christmas

"We are endlessly grateful for the extraordinary care she is receiving, yet we live with the heart-breaking truth that for our daughter to receive the gift of a new heart, another family must first experience unimaginable loss.

"That knowledge sits with us every single day—it is devastating, conflicting, and heavy with guilt, hope, and sorrow all at once. We see first-hand how deeply connected our lives are to the decisions other families make during their darkest moments," she said.

"JJ and I really just want to raise awareness of organ donation. The shortage in England and Ireland is fairly bad, people in Ireland are opting out. It's an awful position to be put in, to have to think about donating your child's organs. I would have felt the same before, but organ donation is something we have to think about as parents," Grainne explained.

"We have to be positive for the girls and avoid any negativity. It's hard on both of them, not just Aoife. My mother is taking care of Orlaith, and we fly home to her and fly her over as often as we can. I always tell them that it's okay to be sad, and it's okay to cry, but we have to get on with it. It's what Aoife needs," she said.

Grainne and JJ urge parents to consider opting to donate their children's organs to save the lives of other children, should the unthinkable ever occur.

Both JJ and Grainne praised the fantastic work provided by CHUF, the Children's Heart Unit Fund in Newcastle. The fund has allowed Aoife to undertake music lessons, and they teach children on the ward for an hour a day. 

They also praised the UK's Rainbow Trust, which has allowed Aoife to partake in activities and crafts for two hours a week, much to Aoife's delight.

JJ and Grainne had thought that it would be a long time before Aoife could be considered for the transplant list, but Aoife fought persistently in her health battle. 

"Between therapy and OT, and learning to walk again, she has been absolutely brilliant. It goes to show that all she needs is that heart," Grainne said.

"She is an absolute warrior, and she has never complained. Aoife left Ireland asleep and woke up in a different country attached to a machine. She never complains, and never gives out," her mother praised.

"It's hard for others to think about, but we have to raise awareness. We are praying and waiting. I would have struggled to consider it in the past, but now you see what a gift organ donation can be. It kills us to think of what has to happen for Aoife to get her heart, it's an awful decision made by another family to save our daughter. 

Pictured: Seven year old Aoife Fleming

"By sharing our story, we hope to raise awareness of the vital importance of organ donation, while also honouring the families who make the bravest, most selfless decision at the darkest moment of their lives," she said.

"We ask parents to consider organ donation now, before you are ever faced with that choice in crisis. No one should have to make such a life-changing decision while overwhelmed by shock and grief. Any chance our daughter has exists because of their compassion, and this is something we will forever carry with us.

"In times of darkness, organ donation offers hope, turning loss into life and strangers into heroes," she finished.

Aoife continues to grow stronger under the exceptional care of the dedicated team at the Freeman Hospital. Supported by advanced medical technology and a team of consultants, doctors, nurses, and therapists who are helping her through this journey.

She is being cared for with compassion as she waits for the life-changing gift of a new heart. Her bravery and the love around her highlight the incredible resilience of children.

The parents wished to thank the staff at the Freeman Hospital, from the cleaners and canteen staff to the doctors and nurses, for their kindness and exceptional work.

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Children in need of a transplant are waiting longer before they can receive an organ because the number of young organ donors remains static. More organ donations from children and young people are needed to save the lives of children, babies and even adults waiting for a lifesaving call.

For more information on organ donation, click here.