Ian Zwanepoel spent the first five months of his life in a Neo-Natal Intensive Care Unit. With bouts of diarrhea and vomiting, an enlarged liver and spleen, and inflamed skin, doctors couldn’t find the source of the problem. Ian’s parents traveled daily to visit him while doctors consulted widely, enlisting the help of specialists. But Ian’s condition only worsened.

“He was wasting away,” his mother Elbie remembers. “We were feeling so hopeless.”

Then, Elbie says, a miracle arrived: Professor Claudia Gray. Professor Gray reviewed all previous tests as well as both parents’ family medical history and surmised that it may be a genetic disease. Soon it was confirmed: Elbie was the carrier of a rare disease called IPEX Syndrome, which could manifest in male children and is life-threatening in early childhood. Dr. Gray started Ian on immunosuppressants and his condition finally started to improve. Under Dr. Gray’s care, Ian smiled for the first time.  What a magical day this must have been! We are often sent pictures of our young patients in hospital, fighting awful diseases, but with big smiles on their faces. Children are so resilient and brave!

Finally, five months after his birth, Ian went home for the first time. Soon, he started to look like a healthy child. Elbie refers to this period as a “beautiful window,” when they could finally dress Ian in normal clothes and take him for strolls in Kirstenbosch Gardens. Ian often had to go in for immunoglobulin infusions, “but at least I had my baby at home,” Elbie says.

However, Ian was still at risk. If he was exposed to the slightest virus, his health could quickly spiral. The family stayed in absolute isolation, only allowing visits from close family members.

A transplant would be his only cure, so the SABMR activated a donor search. Finally, at Christmastime, the Zwanepoels got the call that there was a donor in Germany, and transplant preparations began. On the day Ian began chemotherapy, Elbie’s sister surprised her all the way from Abu Dhabi. “She deserves a monument, my sister,” Elbie says.  It’s quite common for donors and patients to come from different countries. That’s why it’s critical that national registries like ourselves coordinate with other registries. The SABMR is the only World Marrow Donor Association-accredited registry on the African continent, meaning we’re part of an amazing collaborative community of top-quality registries around the world who work together to save lives.

The transplant was a success, with almost 90% engraftment. Soon, Ian’s hair started growing, and at 19 months old, he walked for the first time.

Now, Ian is 8 years old in Grade 3, his IPEX forgotten. “He’s a very gentle, soft, caring, loving child,” Elbie says. According to Elbie, Ian has an artistic soul, and is constantly drawing pictures or daydreaming. He’s full of stories and loves Legos.

When Ian was four, Elbie and her husband welcomed a second child, Lisa. Because of concerns of IPEX being passed on to a second male child, Elbie underwent several cycles of In Vitro Fertilisation to test for the gene, and eventually, to select a female embryo.

“We are so blessed that we had such a wonderful outcome, to have two healthy children,” Elbie says.

As for Ian’s donor, who is the same age as Ian’s dad, Elbie says, “We’ve told Ian that he’s got super-blood from Superman in Germany.” Three years ago, the families connected online, and now Elbie frequently exchanges texts with him and his wife, sending photos back and forth. “It was amazing to see how it touched their lives as well,” Elbie says. “He has really lived up to our expectations of Superman.” Elbie plans to invite him to South Africa soon.