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 Johannesburg, spent years battling a condition that changed not only his life but that of his entire family.

Today, he is in grade 1, rides his bicycle, swims and can finally drink water without the restrictions that once governed almost every part of his day.

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. 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 400ml 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.