Five months into her pregnancy, Jasmin French realised the baby inside her would have the odds stacked against him.
Because, at her 20-week pregnancy scan, she and her partner were told to prepare for the worst — their little one had no reasonable-sized kidneys.
Against the odds, their baby boy Rory Hoffman, was born at almost 36 weeks with one small, abnormal shaped kidney.
But that wasn’t all. He also had a blocked urethra and no opening to his bottom.
So, within an hour of entering the world, Rory underwent two emergency surgeries to put a stint in his bladder and a colostomy — a procedure that brings the colon to the surface of the abdomen to form an opening.
“He stayed in the neonatal unit for about a month, and over that month he defied all the odds,” Ms French said.
“We went home and he was at 30 to 40 per cent kidney function at that stage.”
Nine years later, the Byford boy now has to beat the odds again.
He is in renal failure and needs a kidney transplant to survive.
Today, his kidney only measures at 5.5cm — the average size of an infant’s kidney. He also has a slight heart murmur and extra ribs.
The extensive health issues continue to compound with a scan also recently revealing he is missing his right femoral artery.
Despite all of these health challenges, Rory tries to go to school as much as possible and loves playing basketball, football and board games with his friends and family.
And, in a heartbreaking poem, he revealed he wished he had two kidneys so he could do more.
“If I had two kidneys I’d be able to look inside the classroom more often,” he wrote.
“If I had two kidneys I would not be able to get touched by a needle often.”
But his poetic dreams seem so far away because he could become sicker in the coming months as he is now at stage IV kidney disease with his kidney only functioning at 16 per cent.
The perfect scenario was that one of his parents could be a living donor and give him a kidney he so desperately needs.
However, testing revealed that choice wasn’t viable.
Ms French said hearing that news was devastating for the whole family.
“Rory wanted a kidney from one of us because when you’re nine that makes the most sense,” she said.
“I was sort of stuck in this position where I felt really helpless and I didn’t know what to do.”
To be a match, donors are tested to see if they have a compatible blood type, similar tissue types and the right antibodies.
Running out of options, Ms French turned to social media for help.
She posted a shout out on Facebook, opening the door to anyone who might already feel a calling to learn more about living kidney donation.
“It was just terrifying to think we were just going to have to wait for him to get sick and then have to go on dialysis before going on a waitlist. It just didn’t feel right,” Ms French said.
“I wanted to be the one to help my son, but I can’t do anything else other than ask others.”
The post got more traction than anticipated with Rory’s renal nurse saying there had been an influx of West Australians asking about being a donor.
“I have obviously cried a lot in the last six months with just general emotions and feeling overwhelmed, but these were tears of admiration,” Ms French said.
“On the side of feeling guilty for having to ask, there will never be enough words to show how much gratitude I have for those who offer.”
One person who enquired has been through the testing and is now in the Australian and New Zealand Paired Kidney Exchange with hopes they will be a match for Rory.
Rory said getting a healthy kidney would make him “happy, proud, and excited”.
“I’ll eat more and gain weight. I get to grow. I can get better at maths and other things in school,” he said.
“I’m a lucky boy.”
If a match is not found before Rory gets sicker, he will be put on dialysis which acts as an artificial filter for your blood.
Dialysis is usually required three days a week for three to five hours per session.
If Rory is put on dialysis he can be on a waitlist to get a kidney from a deceased donor, but Ms French doesn’t want to see him become so sick he needs that option.
WA is also the worst State for operating dialysis machines above their recommended capacity.
One machine should enable care for four people per week at a maximum, however the latest Haemodialysis Capacity Survey revealed ratios of 4.65 people in Perth — and reaching six people in some regions.
This indicates some WA regions have workloads over 150 per cent of usual capacity.
“For now we’re just waiting quietly and hoping for the best,” Ms French said. “I am a little bit overcome with the power of social media.
“I’m hoping to use the opportunity to just encourage people to become living donors, but also deceased donors, because they’re equally as important.”
Anyone interested in seeing if they can be a living kidney donor for Rory can contact the Perth Children’s Hospital renal transplant team at renalCNS.PCH@health.wa.gov.au
Otherwise, to learn more about organ donation visit DonateLife.
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