Tiana-Leigh's Story
Dare to Thrive and Not Just Survive
At seventeen, Tiana climbed onto the back of a motorcycle and led a mass ride of motorcyclists through the streets of Cape Town, an oxygen tank strapped to her back. The doctors who once gave her weeks to live never imagined this moment. Neither did the specialists who removed her kidney at 18 months, or the surgeons who washed her lungs while a machine breathed for her. Born with a rare lung disease and facing medical challenges that would overwhelm most adults, Tiana has transformed her journey into a powerful message: “Dare to Thrive and not just Survive.”
Early Challenges
When Tiana was born on July 20, 2006, her first breath came with difficulty. Immediately rushed to intensive care, the newborn’s struggle was just beginning. By three weeks of age, she underwent an emergency lung biopsy in Johannesburg, where doctors delivered a devastating diagnosis: a rare, life-threatening lung disease with a prognosis of just weeks to live.
Those first years brought additional battles. Severe epilepsy caused up to five seizures daily. Tiana required permanent oxygen support and continuous positive airway pressure (CPAP) therapy to keep her airways open through the night.
A Journey Through Medical Adversity
At just 18 months old, as if her breathing challenges weren’t enough, Tiana was diagnosed with Wilms tumor—a rare kidney cancer. After chemotherapy to shrink the tumor, surgeons had to remove her entire kidney, followed by months of additional chemotherapy treatments.
As she grew, so did her medical file. At age six, in 2012, Tiana underwent her first double lung lavage—a procedure where doctors wash the lungs with saline solution to clear accumulated material. This complex treatment required placing Tiana on ECMO, a life-support system that temporarily took over the function of her heart and lungs. The procedure was successful, but would need to be repeated twice more in the coming years.
By March 2014, at just eight years old, Tiana received another devastating diagnosis: pulmonary hypertension, a condition causing high blood pressure in the lung arteries. Doctors gave her eight months to live. Her oxygen needs increased dramatically to 8 liters per minute—a level she continues to require today.
Finding Answers
A turning point came in 2016 when Tiana’s family relocated to Cape Town’s Christiaan Barnard Memorial Hospital. There, after another gruelling double lung lavage procedure, doctors sent Tiana’s DNA to America for comprehensive testing.
The results were surprising: Tiana had been misdiagnosed all those years. She actually has ABCA3 deficiency, a rare genetic condition affecting the production of lung surfactant—the substance that keeps lung air sacs from collapsing after each breath. While the damage from years without proper treatment couldn’t be reversed, finally knowing her true condition allowed for more targeted care.
Rising Above
What makes Tiana’s story remarkable isn’t just her survival against overwhelming odds—it’s her determination to live fully despite them. She remains dependent on oxygen and CPAP therapy at night, she tires easily, and often experiences pain. Yet you’ll rarely hear her complain.
Instead, Tiana has chosen to challenge herself and inspire others. She’s ridden in a V8 Mustang at the Killarney Race Track, led motorcycle mass rides to raise awareness for rare diseases, and pursued her passion for singing by performing with various South African artists.
Through these activities, Tiana shows the world that living with serious medical conditions doesn’t mean life stops. Her unwavering faith, passion for music, and genuine love for others shine through in everything she does.
How You Can Help
Tiana’s journey creates awareness for rare diseases while offering hope and inspiration to others facing similar challenges. Her story has touched lives worldwide, and now we’re growing a foundation to help with:
- Supporting Tiana’s ongoing medical needs
- Assisting others battling rare and life-threatening diseases
- Raising awareness about rare conditions and their impact
Your contribution, no matter the size, helps ensure that Tiana and others like her can continue to thrive, not just survive. By supporting this foundation, you become part of a movement that recognizes the strength of the human spirit in the face of seemingly impossible odds.
Please join us in supporting Tiana’s mission. Together, we can help turn rare disease awareness into action and hope into reality.