After seven years on dialysis, Mohamed, 8, is finally learning what it means to be a child

For most of his young life, eight-year-old Mohamed Zayd Khota knew hospitals, dialysis machines and strict routines better than the freedom of being a child.

Diagnosed with end-stage kidney failure at just eight weeks old, Mohamed from Lenasia, south of Joburg, spent years battling a condition that changed not only his life but that of his entire family.

Mohamed’s story comes as August marks National Organ and Tissue Donation Awareness Month.

Despite advances such as South Africa’s first liver perfusion machine, the Transplant Education for Living Legacies, a patient-founded South African non-profit organisation, says the country’s deceased organ donation rate remains among the world’s lowest, at fewer than 1.4 donors per million people.

Mohamed’s mother, Furzanah Khota, says watching him experience ordinary childhood moments after his kidney transplant has been both beautiful and difficult to process.

“Mohamed was born with both of his kidneys, but at eight weeks old we found out that he had end-stage kidney disease.

“While we were processing this kidney failure, he became seriously ill, so that when he was five months old, doctors advised us to have one of his kidneys removed,” she said.

At one-and-a-half years old, he began dialysis, on which he would depend for more than six years.

“He started dialysis when he was one-and-a-half because his body just wasn’t getting rid of the toxins like a normal body,” said Khota.

The dialysis was done at home, with the machine running for about 16 hours overnight and another three hours during the day.

“That was 19 out of 24 hours a day that he was on dialysis. He couldn’t go to school. He couldn’t really do much like the other kids could,” Khota said.

At five years old, Mohamed’s second kidney was removed, leaving him completely dependent on dialysis to remove toxins and excess fluid.

“He had a 400 to 500ml fluid restriction. Even if he was having cereal or soup, the soup would contribute to the fluid because he couldn’t urinate,” she said.

“He could only drink small shots at a time, about 20 to 30ml of water. We also had to make sure he wasn’t out in the sun because we didn’t want him to get thirsty or hot and become dehydrated.”

Mohamed was often tired and lethargic and was sometimes admitted to hospital because of complications.

“Sometimes it was because fluid was stuck in his body. Sometimes he had very high blood pressure and those sorts of things,” his mother said.

Despite this, Khota describes him as a patient child who rarely complained about his treatment.

“There was a point where he was taking 21 medications a day. He was always very good with his medication,” she said.

Mohamed also learned to recognise when his body was struggling.

“He would tell me, ‘Mommy, my legs are sore. I think I need to lie down,’” Khota recalled.

“When we got the news of the diagnosis, your brain doesn’t really comprehend what’s happening. I didn’t even have time to process what was happening because we were just thrown into it,” she said.

As his primary caregiver, Khota had to manage his medication, operate the dialysis machine, keep his equipment clean and constantly monitor him for infections.

“I had to make sure I was always present, make sure the medications were there, the treatment was done, his machine was set up and keep him as clean as possible,” she said.

“We don’t really have carbonated drinks. Coke is a no-go in our house. We just made that adjustment in the family because we knew he couldn’t drink it. So we said, OK, we are also on water.”

After five years on the transplant waiting list and several unsuccessful donor matches, in July 2025, Mohamed received a kidney from a living donor.

According to his mother the transplant was ABO-incompatible because Mohamed has an O blood group while the donor has an A blood group, requiring special treatment before the operation.

“He started Grade 1 this year. He swam for the first time this year. He rides his bicycle. He can drink enough water now,” Khota said.

Yet Khota is still learning to let go of the fear that shaped their lives.

“I’d love to say it got easier now, but some days I still think, ‘Don’t do that’, and then I have to remind myself that, OK, he’s OK now. You don’t have to worry about that.

“Some nights you wake up and you still hear the dialysis machine functioning in the back of your head,” she said.

Prof David Thomson, an abdominal transplant surgeon and intensive care specialist, says about 8,500 people in South Africa are living with end-stage kidney disease, with the vast majority relying on haemodialysis while waiting for a kidney transplant.

He says children are also among those waiting for life-saving transplants, highlighting the need for greater awareness and deceased organ donation.