Fourways mother seeks community help as teen battles another brutal, rare condition
She has spent 142 days in the hospital, endured surgeries no child should face, and now cannot eat or drink without unbearable pain. Seanna’s last hope lies thousands of kilometres away, and her family is pleading for help to get her there.
Many will remember Seanna Potgieter, the brave Fourways teenager whose battle with a rare abdominal vascular condition first came to light shortly after she tested positive for Covid-19.
At the time, her story drew widespread public support as she fought through superior mesenteric artery (SMA) syndrome, survived two failed bypass surgeries and spent long periods in the hospital.
The Fourways community rallied behind her family, helping bring US surgeon Dr Domingo Alvear to South Africa for a procedure costing over R200 000 — the operation that finally gave her relief after years of constant pain.
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But this week, her mother Nadia confirmed that Seanna’s medical journey has taken a heartbreaking turn, and the family now faces their most urgent challenge yet.
“Unfortunately, as seen with people with Hypermobile Ehlers Danlos, fixing one abdominal vascular compression can lead to others, and this is exactly what happened to Seanna.
“During the past 18 months, Seanna has endured Nutcracker Syndrome, which resulted in a left nephrectomy; Pelvic Congestion Syndrome, which led to her left ovarian vein being embolised; and then May Thurner Syndrome, which required a left iliac vein stent.” Now, she is facing the most severe and debilitating condition so far: Neurogenic Median Arcuate Ligament Syndrome (nMALS).
“MALS is the one that shut down her ability to eat, drink or function without pain,” Nadia explained. “She now relies on enteral feeding and a hydration line, which is critical because she only has one kidney. Pain medication does not help.”
Across this long medical battle, Seanna has spent 142 days in the hospital, including her 15th birthday in the ICU. Despite months of consultations, the family has confirmed that no surgeon in South Africa has the required experience to safely perform nMALS surgery.
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The condition is extremely rare and requires a high-volume specialist. Their search led them to Dr Richard Hsu in Connecticut, who has performed more than 1 000 nMALS surgeries with a 90% success rate.
After reviewing Seanna’s medical history, he provisionally scheduled her for surgery on February 18 at Stamford Hospital in the United States.
“This is the first concrete plan that gives her a credible path forward,” Nadia said. The family is currently navigating medical aid approval, but they still face overwhelming costs for travel, accommodation, specialised feeds, medical supplies and ongoing treatment.
To ease the financial pressure, they have reopened Seanna’s BackaBuddy campaign.
“We’re asking for help once again. If you can assist, it gets us closer to giving Seanna the chance to return to a normal teenage life. If you can’t donate, sharing her story still makes a huge difference.”
This is the link to the BackaBuddy: https://backabuddy.co.za/campaign/help-seanna-eat-again
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