Something as simple as seeing her six-year-old daughter drink a bottle of water fills Asmae Rayyan with a sense of peace – which stills feels unfamiliar to her.
It’s only in the last six months that Jasmine has been able to live like other children – to go to school, learn how to ride a bike and play freely with her siblings, even to be able to drink when she is thirsty – having come through a gruelling health journey that most adults would struggle to endure.
Jasmine, from Shankill, Co Dublin, was born with congenital nephrotic syndrome, a severe kidney condition which meant that simply living was a battle.
Up until recently, most of her little life was spent in hospital as her health ebbed away. But then a miracle happened.
Last year, Jasmine was one of six children who underwent kidney transplants at CHI Temple Street, including four from deceased donors and two from living donors.
Asmae – who has three other daughters, Judy, 10, Shayma, 9, and eight-year-old Shahed – with husband Fuad, is sharing her story in gratitude for her donor family and support of the lifesaving awareness campaign this Organ Donor Awareness Week on the impact of organ donation for transplantation and the role that families play in ensuring that your wishes are carried out.
‘She’s now a different child, and we are a different family,’ says Asmae, who still can’t believe the change in her young daughter.
‘She has completely transformed, and we have stopped being terrified. It’s like we can all breathe again.’ The youngest of the four sisters, Jasmine was born early at 35 weeks old.
After some weeks in ICU, Asmae thought her worries for baby Jasmine were over when they were allowed to take her home. In reality, the family’s nightmare was only beginning. ‘Her eyes were always puffy, she was constantly feeding but never gaining weight,’ Asmae remembers.
‘It just wasn’t right.’ After multiple visits to the GP, they brought her to the emergency department of Crumlin Children’s Hospital, where she was quickly admitted, and later diagnosed by consultant nephrologist Dr Clodagh Sweeney.
‘No parent wants to hear those words, it was life-shattering,’ says Asmae of the dire diagnosis of congenital nephrotic syndrome. ‘I had three children with no health problems and this news was so unexpected and shocking.’
Unthinkably, hospitals were to become Jasmine’s second home for the next five years, as the family desperately tried to reorganise their lives to facilitate this devastating new normal. Jasmine underwent albumin infusions and when she was six months old, she had one kidney removed.
She was severely malnourished and required a feeding tube. ‘She was in hospital for six months, was discharged and two days later ended up back in hospital with complications,’ says Asmae. ‘Fuad reduced his hours, and we were actually homeless for some time as we were evicted from the property we were in. That was one of the hardest times in our lives.
‘Our daughter was fighting for her life, she just had infection after infection and she was being fed by a tube, but she was only a tiny baby.
She needed to be held and cared for by her parents and instead she was constantly being prodded at. It was a living nightmare, and as parents we just felt so helpless, watching her fade, not thriving.’
The impact of their baby sister’s condition was felt by her older siblings too, as the family tried to manage work, hospital visits and being constantly on red alert as Jasmine’s life hung in the balance.
‘I had to leave my other three daughters,’ Asmae says. ‘One minute we would be playing in the park, the next I’d get a call to come to the hospital as Jasmine’s temperature had spiked. Our sense of family was seriously disrupted. Mentally, it was beyond exhausting.’
All the physical trauma was also taking a psychological toll on poor little Jasmine, who was becoming more and more distressed with her gruelling treatment.
‘She was starting to lose trust and just screaming when she even approached the hospital, as she knew it meant blood tests and injections and pain,’ says Asmae.
‘It’s so hard to watch your child go through that.’ Jasmine was placed on peritoneal dialysis (PD), which meant 12-hour overnight treatments at home, every night. ‘Everything had to be sterile,’ Asmae says.
‘We had to plan our entire lives around connecting her by 6pm. If her dialysis tube was blocked, the alarm went off, and one of us had to run in and fix it, no matter what.’ She was five years old when her second kidney was removed. By then, Jasmine’s fluid intake was restricted to just 100–200ml per day.
‘She was so thirsty, it was heartbreaking having to deny her a drink when she pleaded for it,’ her mother shares. ‘We found her drinking from flower vases or licking rain off the trampoline. She was desperate and called us cruel when we didn’t give her a drink. It was heartwrenching.’
Eventually, she transitioned to haemodialysis (HD) three times per week at Temple Street Children’s Hospital, which she underwent for 3-4 hours at a time.
‘It was tough, but we saw improvements in her skin, her energy levels and her appetite,’ says Asmae. But while it worked better for her than PD, it wasn’t plain sailing.
‘She’d go pale, dizzy, even faint sometimes when the dialysis machine drained more fluid than was needed, and she screamed when the sticky bandage which secured her tube to her body was removed and changed once a week.’
Fuad was screened for living donation but didn’t progress far as he had high blood pressure, and Asmae was screened and was preparing to donate a kidney to her. But then, in August 2024, came the life-changing call that a kidney was available.
‘We were out shopping,’ Asmae remembers.
The surgery took place at Temple Street Hospital, but in the first few hours after the operation doctors were concerned the kidney wasn’t functioning. ‘Her father and I sat in the car crying, thinking what if it doesn’t work?’ Asmae says.
But later that day, Jasmine passed urine, which was a sign the operation was a success and the donor kidney was working.
‘The best moment in our life was handing her a full bottle of water and saying, “Drink all you want.” I’ll never forget that,’ smiles Asmae.
While Jasmine still tires easily and is on immune suppressants, the transplant has been life-changing.
It’s given her the chance to be a child again, playing with her sisters and even going back to school, where she is in senior infants. It’s also brought the family together again.
‘In her first year at school, she was on dialysis and she could only attend for a couple of hours each day as she had no energy,’ says Asmae. ‘She couldn’t swim before because of her dialysis tubes but now she loves going swimming. Her appetite has improved and she has a more varied diet now.
‘Transplantation affects the whole family and our other daughters had to grow up quickly. They’ve learned patience, compassion and how to wait their turn.
‘It’s easy for siblings to feel forgotten when a child is seriously ill in the hospital and parents have to spend so much time away from home. But now we can simply be a family again, away from the constant sickness and hospital visits.’
Despite the family’s joy at Jasmine’s second chance at life, Asmae admits it’s tinged with sadness at the thought of the donor family’s loss.
‘We are forever grateful to the donor family, and we wrote a letter to them which was sent anonymously through the transplant coordinator to express how grateful we are,’ says Asmae.
‘We got a letter in return, and I could feel the sadness in it, but they expressed comfort too in that their loved one was saving our daughter’s life. They didn’t just save Jasmine, they gave our whole family a second chance.’
The Organ Donor Awareness Week 2025 campaign ‘Don’t Leave Your Loved Ones in Doubt’ is organised by the Irish Kidney Association (IKA) with support from the HSE’s Organ Donation Transplant Ireland (ODTI) office. To get a donor card and for more information, see ika.ie/ donorweek/
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