'It felt like life restarted after mum donated her kidney'

"I was always waiting, with a bag packed at the side of my room and my phone ringer on waiting, for the call they found a kidney."

Jamie Gear was born with Alport syndrome, a hereditary condition affecting the kidneys, hearing and eyesight, which he inherited from his mother.

The disorder is estimated to impact around 1% of the population, according to the National Kidney Federation.

After managing the condition throughout his life, Jamie's health deteriorated following a chest infection in 2023, which caused his kidneys to fail.

He then spent nearly two years waiting for a transplant.

Despite also living with Alport syndrome, his mother, Susie Gear, from Sheepscombe, was assessed and cleared to donate one of her kidneys, offering her son a lifesaving transplant.

On Jamie's 19th birthday in March 2023, his kidneys finally failed after years of living with symptoms of the condition.

He was put onto dialysis while waiting for a transplant, which "took over" his life. It meant he always had to be near a hospital.

The dialysis treatment he underwent for nearly two years also placed a significant strain on his body.

"My energy levels were at an all-time low, I couldn't play sport, and I was limited to a litre of fluid a day so I was constantly dehydrated," he said.

"My whole life revolved around getting a transplant and I was constantly on edge.

"I couldn't commit myself to big events as I had to be prepared that at any point I had to drop everything and say goodbye to my life for the next six months to recover."

His mother, Susie Gear, had been living with the condition herself for over 40 years with mild symptoms.

When Jamie's kidneys failed they were told that Susie donating a kidney would "never be an option".

However, she sought advice from a panel of specialists, who concluded each case should be assessed on an individual basis and agreed she could donate to her son.

Jamie described the moment he learned his mother could donate as "so emotional and completely life-changing".

Susie added: "For a mum with a genetic variant which passes on to your children, it can be so complicated emotionally, so to be able to do something to help is fantastic."

As well as managing her own health, she faced the emotional weight of having passed the genetic condition on to two of her three sons.

Susie founded the charity Alport UK at a kitchen table in Eastcombe 12 years ago. She wanted to raise awareness and support others.

Her eldest son had previously received a transplant from a donor who had died just four days after joining the waiting list.

But Jamie had a very different experience.

Now two years after the surgery, both Susie and Jamie are doing well but the transplant is expected to last up to 15 years.

Susie said the family's journey with kidney disease is far from over.

"Kidney disease is a really hard thing to live with. It can be quite isolating because many people think that once you've had a transplant, you're fixed.

"But that's not the reality. My boys will need three kidney transplants over their lifetimes, so they still have two more to go."

But for Jamie, the difference has been momentous.

"People say 'life-changing', but it's more than that," he added. "It's like getting your life back.

"My social life has completely turned around, at university, I was finally able to do normal things - go to the pub, go on holiday with friends."

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