Seeking help for a life free of pain
Seanna Potgieter is a sunflower in the darkest of storms. At 15, she has battled multiple rare conditions, and now cannot eat, drink, or even laugh without severe pain. Her family is seeking support to bring her to a specialist who could change her life forever.
Seanna Potgieter is a brave 15-year-old from Fourways, who has lived with more pain than most adults will face in a lifetime.
“She has spent all her teenage years in hospital beds, ICU units, and doctors’ offices,” said her mother, Nadia. “While other teens go to school, study for exams, make plans with friends, and plan their futures, she fights to make it through a day without pain.”
Nadia admits it has been a tough journey, but Seanna’s positivity has been a saving grace. “Her mantra is: I got this. Her favourite flower is the sunflower, which I think it’s fitting, as a sunflower always looks towards the sun.”
Read more: Fourways mother seeks community help as teen battles another brutal, rare condition
Nadia said everything changed after her daughter tested positive for Covid in 2022. Seanna’s body never recovered, with one diagnosis following another: Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and a series of rare Abdominal Vascular Compression Syndromes (AVCS).
“These conditions robbed her of a normal life,” Nadia says.
She has had far too many surgeries in her short life, for SMA Syndrome (SMAS), Nutcracker Syndrome (NCS), May Thurner Syndrome (MTS), and Pelvic Congestion Syndrome (PCS). “She fought them all and won, but the last one is the most brutal one of them all – neurogenic Median Arcuate Ligament Syndrome (nMALS).”
Nadia said Seanna’s condition is debilitating. “She cannot eat. Even water hurts. Breathing too deeply hurts. Laughing hurts. She lives on tube feeds and IV hydration through a PICC line. She is exhausted all the time. She cannot go to school. She cannot see her friends. She spends most days in bed.”
Despite having private medical aid that covers in-hospital care, Nadia says the family struggles with the ongoing costs. “Specialist visits, medications, blood tests, tube feeding supplies, IV supplies, travel to appointments, therapy to help her cope with the trauma. It is a mountain that keeps growing.”
Also read: Have you talked to your kids about organ donation? Here’s how to start
After consulting local doctors without success, the family sought international expertise.
“We first consulted with a specialist whose career is focused on these conditions, Dr Kurtis Kim, who reviewed all her history and scans and referred us to Dr Richard Hsu at Stamford Hospital in the US. He is one of the few surgeons in the world who understands nMALS and has helped more than a thousand patients. He is also the surgeon with the highest success rate for this type of surgery.”
Seanna’s parents hope for a life-changing outcome. “All we want is for Seanna to have a chance at a normal life. To eat without pain. To breathe without hurting. To sit in a classroom. To laugh with friends. To have a future.”
They are appealing for support through donations and welcome every cent to her BackaBuddy campaign.
“We are asking for a hand up to make this possible. We just cannot carry the financial load alone anymore. Your support will help us cover her ongoing medical costs and move us closer to the specialist who can potentially change her life once and for all.”
Link: https://backabuddy.co.za/campaign/help-seanna-eat-again
Details: nadiapotgieter@live.co.za
Follow us on our Whatsapp channel, Facebook, X, Instagram and TikTok for the latest updates and inspiration!
