Organ donation triumph: Tugela Mouth parents donate kidneys to daughters, brother to donate liver

Patients can spend up to 15 years on the kidney transplant waiting list, but thanks to a genetic gift, sisters Tanya (23) and Mia (17) Nel were both able to receive kidneys from their parents, Paul and Annatjie.

Their brother Marco (22) is now preparing to donate a portion of his liver to his older sister too.

That family link is crucial as many patients face repeated disappointment and delays in the race to find a donor outside of their personal circle.

Tugela Mouth’s Nel family never thought they would be facing multiple organ transplants with three healthy children, but had their lives upended in 2018 when Tanya was diagnosed with end-stage kidney failure at 17.

Little did they know then that both Tanya and Mia would be diagnosed with a rare disease called Nephronophthisis type 3 (NPHP3). It is an incurable genetic disorder that leads to an initial loss in kidney function and later loss in liver function, both of which require dialysis or transplants.

“It all started when Tanya began experiencing itching, weight loss and constant tiredness,” said Paul, who is the senior prosecutor at the KwaDukuza court.

“We saw a number of doctors who thought it might be eczema or allergies. It was only when she was hospitalised that they diagnosed the renal failure.”

Tanya’s kidneys were working at just 5% and she was anaemic too. It would take another two years and expensive genetic testing in San Francisco before Tanya was diagnosed, in which time she had to start dialysis three times a week.

Once NPHP3 was confirmed, the rest of the family were tested and it was revealed that Mia was also affected.

“In 2019 I underwent testing to determine whether I was a viable donor for Tanya,” said Paul.

“It is quite an in-depth process, because for a kidney to take in the organ recipient’s body, there must be compatible tissue otherwise the body will form antibodies.”

In the case of kidney donations, parents are at least 50% likely to be a match for their children. Luckily, Paul was found to be a match, but Covid-19 would prove the next obstacle, delaying all elective transplants.

It was not until June 2021 that the procedure, at Wits Donald Gordon Medical Centre in Johannesburg, could take place.

“It all seemingly went well and I was discharged after five days, but Tanya was kept behind and later tested positive for Covid,” he said.

“We only found out this year that the doctors thought she was going to die, because all other transplant patients who had tested positive passed away.”

But Tanya fought to recover and has lived as normal a life as possible since, now studying in Cape Town.

Earlier this year however, Mia’s kidney also showed signs of failure. Annatjie was thankfully a match and the transplant was performed successfully in May.

In the meantime, Tanya’s liver has started to degenerate and a donor may be needed as soon as next year.

Marco is a match and will likely donate a portion of his liver to his sister.

“Mia will one day need a liver transplant too and even then, the donated organs have an ideal lifespan of 15 years.

“The likelihood is that they are going to spend their lives between transplants and dialysis, which is why we feel so passionately about registering as organ donors,” said Paul.

Organ donation is an opt-in system in South Africa, meaning you have to personally register to be placed on the list while alive or for your organs to be donated after you die.

“Regardless of your personal wishes – even if it is in your will – your family is allowed to deny organ donation after you die.

“It is so important to have that conversation with your loved ones so they know your preference.”

August is National Organ Donation Month and the Nels are trying to raise awareness for the issue, one that you may not think about until it affects your family.

Find out more on the Transplant Education for Living Legacies (TELL) website at tell.org.za

For more information on the sisters’ conditions, Follow ‘Tanya and Mia’s journey: Our life living with a rare disease’ on Facebook.

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