One little girl’s journey to transplant

Six year old Jasmine Rayyan, from Shankill, has come through a health journey marked by enormous struggle and resilience since she was an infant which most adults will never endure.

A transplant last summer (2024) transformed her life and her family is sharing her story in gratitude for her donor family and support of Organ Donor Awareness Week.

The lifesaving awareness campaign is organised by the Irish Kidney Association in association with the HSE’s Organ Donation Transplant Ireland www.ika.ie/donorweek/

The youngest of four sisters, Jasmine was diagnosed with severe kidney problems when she was just six weeks old.

Her parents knew early on something was wrong.

“Her eyes were always puffy, she was constantly feeding but never gaining weight,” her mother Asmae remembers.

“It just wasn’t right.”

Jasmine and her mother Asmae

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.

For the next five years, hospitals became their second home.

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,” the mother of four recalls, was discharged and two days later ended up back in hospital with complications.

“That was one of the hardest times in our lives.”

Jasmine was placed on peritoneal dialysis (PD), which meant 12-hour overnight treatments at home, every night.

“Everything had to be sterile. We had to plan our entire lives around connecting her by 6 p.m.,” Asmae says.

“If her dialysis tube was blocked the alarm went off, 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 then 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.”

Eventually, she transitioned to haemodialysis (HD), three times per week at Temple Street Children’s hospital, which she underwent for 3 to 4 hours at a time.

“It was tough, but we saw improvements in her skin, her energy levels, and her appetite,” her mother says. But while it worked better for her than peritoneal dialysis, 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.”

My husband was screened for living donation but didn’t progress far as he had high blood pressure and I then was screened and was preparing to donate a kidney to her.

Then, in August 2024, came the call from Beaumont Hospital came out of the blue to tell us donor 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 is 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.”

The transplant has given Jasmine the chance to be a child again, playing with her sisters Judy (10), Shayma (9), and Shahed (8), learning to ride a bike, and attending higher infants at school.

“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.

“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. ”

“The staff have been amazing at both Crumlin and Temple Street children’s hospitals”.

“We can’t thank them enough. They never gave up on Jasmine. The Irish Kidney Association has been very supportive also”

“Transplantation affects the whole family,” her mother explains.

“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,” she adds.

“But the transplant has given us a chance to spend more time together and to simply be a family again, away from the constant sickness and hospital visits.”

Jasmine still tires easily and is on immune suppressants, but the difference the transplant has made is life-changing.

“We were living in constant stress and uncertainty,” Asmae shares.

“Now, even with the challenges, we finally have something like a normal life.”

Asmae adds: “We are forever grateful to the donor family.

“We wrote a letter to them which was sent anonymously through the transplant coordinator to express how grateful we are.

“They didn’t just save our daughter Jasmine, they gave our whole family a second chance.”

Jasmine is one of six children who underwent kidney transplants at CHI Temple Street in 2024, including four from deceased donors and two from living donors.

Organ Donor Awareness Week, which is organised by the Irish Kidney Association, started last Saturday (10th) and runs until this Saturday, May 17th.

For more information on Organ Donor Awareness Week or how to get an organ donor card visit www.ika.ie/donorweek