A courageous woman has opened up about her harrowing journey with a rare kidney disease which has seen her undergo not one but two life-saving transplants.
Jade Levin, from Reading, Berkshire, UK, received two transplants first from her father and most recently, from her older brother.
She began having issues with her kidneys just days after she was born when it was noticed her kidneys were failing to function properly, eventually receiving a diagnosis of the rare genetic disorder TTC12B.
Growing up seeing her disease getting worse rather than improving, her and her family desperately searched for an answer before finding out that the answer was in their own family.
She said: “I was born fine, but a few days later, I was back in hospital failing to thrive.
“I feel so incredibly lucky that my dad was a match. Not everyone gets that chance, and I know how rare and special this is.
“As horrible as it is to go through as a family, when you look at it as an outsider, it’s, I mean, it’s the most beautiful family ever.”
After years of monitoring, Jade’s condition deteriorated when she was around nine years old, and she was forced onto dialysis for the first time, which is where a machine filters the blood in place of the failing kidneys.
She told how in 2011, she received her first kidney transplant from her father, which allowed her to lead a relatively normal life for nearly a decade.
Growing up with kidney disease meant missing out on school, swimming lessons, and social events but despite this, Jade explained that she stayed optimistic due to her family’s support.
But in early 2021, things took a turn for the worst.
Jade told how she suffered from recurring infections and unexplained weight gain signalled that her kidney was failing once again, and within days of a routine check-up, she was back on dialysis.
Determined to take control of her health, Jade opted for home dialysis, a decision she believes gave her more independence.
Incredibly, Jade’s brother Jesse stepped up to be tested as a potential donor and was found to be a match – giving his sister the ultimate gift, a second kidney transplant.
With the operation being a success, Jade says she is now ‘thriving’ and takes medication every day whilst also attending check-ups every few months.
After the siblings formed such an unbreakable bond through the transplant, they decided to get matching tattoos to mark that there will always be a piece of Jesse with Jade.
She said: “It was a very quick turnaround for me, one day I was told I’d be fine, and three days later, I was on dialysis again.
“I always encourage others to try home dialysis, it gives you control over your disease.
“I’m thriving now, I just want to live my best life while I can. I’ve never known anything different. This is my normal.”