The steady hum of an oxygen machine fills the modest Bellville home where 19-year-old Tiana Smith lives with her mother, Alta. It is the constant soundtrack to her life — a quiet mechanical rhythm that has accompanied her since infancy. A clear tube rests beneath her nose, delivering the oxygen her lungs cannot manage on their own.
Yet for Tiana, that hum is not a symbol of limitation. It is the sound of survival.
Nearly two decades ago, doctors warned her parents their newborn daughter would probably survive only six weeks. Today, she sings on stage, dreams of opening her own make-up studio, rides pillion on motorbikes and spends time at the shooting range. She gardens, bakes and loves sushi. She plans for a future that once seemed impossible.
Looking at her now, smiling as she welcomes visitors into their home, it is difficult to reconcile this vibrant young woman with the critically ill baby who spent her first months fighting for her life in a Johannesburg hospital.
A Fragile Beginning
From the moment Tiana was born in Zimbabwe in 2006, her survival was uncertain.
“She went straight to intensive care as soon as she was delivered,” Alta recalls.
Alta and her husband could do little but take each day as it came.
“We were in survival mode, just focused on our child and listening to what the doctors were saying.”
Within days, they were told their daughter would need specialist treatment in South Africa. Friends, family and donors rallied around them. Tiana was flown to Sunninghill Hospital in Johannesburg on a special flight, accompanied by her parents, while her older siblings — Andries, Maria and Carel — remained in Zimbabwe with relatives.
An open-lung biopsy was performed and the tissue sent overseas for testing. The diagnosis was pulmonary alveolar proteinosis (PAP), a rare condition in which protein-like material builds up in the lungs, blocking oxygen absorption.
The prognosis was devastating.
“They told us she had just six weeks. It was devastating. You look so forward to the birth of a child and suddenly it feels like the world is falling out from under your feet,” Alta says.
Alta spent hours beside her baby’s hospital cot, surrounded by machines that kept her daughter alive.
“After the first six weeks, things were looking awful,” she says. “But then there was suddenly a turnaround.”
Tiana began improving steadily. After nearly six months in hospital, she was well enough to go home. Donations were used to purchase oxygen equipment so she could continue receiving support at home.
“It was incredible to leave the hospital, very emotional,” Alta says. “All the nurses and doctors were there to say goodbye. It felt like a movie.”
The family returned to Zimbabwe on another special flight. But the relief was short-lived.
Cancer at 18 Months
At just 18 months old, Tiana was diagnosed with a rare form of kidney cancer. The tumour was too large to remove immediately. Once again, she was flown to South Africa for treatment.
This time, the move became permanent.
“We’ve never been back to Zimbabwe since,” Alta says.
The family settled in Pretoria near the hospital. Chemotherapy began almost immediately.
“We went straight into chemo. The first four months we were constantly in hospital.”
After the initial round of treatment, surgeons removed the tumour along with the affected kidney. More chemotherapy followed.
“It was touch-and-go. She got a lot of infections because of the chemo,” Alta says. “The first two to three years after the cancer diagnosis we were in hospital more than we were at home.”
Despite the odds, Tiana survived.
The prolonged illness and relocation placed immense strain on the family. Alta’s marriage eventually collapsed under the weight of constant medical crises.
A New Diagnosis
As if cancer were not enough, Tiana developed further complications, including pulmonary hypertension — high blood pressure in the arteries of the lungs.
In 2016, when she was 10 years old, a specialist in the Western Cape reassessed her case. Something, they believed, did not add up.
A new lung biopsy led to a revised diagnosis: ABCA3 deficiency, a rare genetic heart condition affecting surfactant production in the lungs. Without sufficient surfactant, the tiny air sacs struggle to remain open, preventing efficient oxygen absorption. The heart is forced to work harder to pump blood through narrowed vessels, increasing the risk of heart failure.
The new diagnosis brought clarity — and harsh reality. Tiana would always need oxygen support.
Alta remarried and the family relocated to St Helena, a remote British island in the Atlantic Ocean about 1 900 kilometres off Africa’s coast. The clean sea air and lack of pollution suited Tiana’s fragile lungs.
For a time, island life offered peace. But in 2018, when a new airport opened and regular flights replaced the ship service to South Africa, complications arose. Commercial flying posed risks for Tiana, making medical access uncertain.
The family returned to South Africa and eventually settled in the Western Cape. Alta’s second marriage ended, and she focused entirely on caring for her daughter.
“When we lived in Pretoria we were in hospital about every second month, but the climate in the Cape is much better for Tiana,” Alta says.
Life on Oxygen
Tiana can breathe independently for just 45 seconds before requiring supplemental oxygen. She remains connected to her machine day and night, switching to portable cylinders when leaving home.
“She takes things step by step,” Alta says. “When she gets short of breath, she stops and rests to catch her breath. She’s incredibly adaptable.”
There are frightening moments. When the oxygen machine fails, her oxygen saturation can plummet from 93 to 34.
“By the time I get to her, her oxygen saturation has dropped from 93 to about 34 and sometimes she has seizures. Then I have to revive her.”
Arizona, Tiana’s trained support dog, provides another layer of protection.
“She’s saved Tiana’s life countless times.”
Financially, life remains tight. Alta left her career as a marketing manager years ago and now relies on outdoor photography, print work and odd jobs to cover basic expenses. A group of motorcyclists — known affectionately as “the bikers” — have stepped in to help with fundraising, hospital visits and emotional support.
“The bikers have helped incredibly,” Alta says. “They’ve sat with me in hospital, relieved me so I could sleep, brought food, prayed. They especially help with awareness and fundraising.”
Tiana loves riding with them during rare disease awareness events, her oxygen cylinder securely strapped in place.
Dreams Beyond Diagnosis
Despite everything, Tiana refuses to see herself as defined by illness.
“She’s never said: ‘I’m sick, I can’t’. It’s always: ‘I’m sick, but I do my best’,” Alta says.
Homeschooled for much of her life, Tiana now focuses on completing her make-up course.
“For now I want to finish my makeup course and build a client base as soon as possible. Maybe one day I’ll have my own little studio. I’m open to wherever it takes me as long as I can just work and make people beautiful.”
Music is her refuge.
“It takes me to another world and makes me feel stronger. I don’t think people always realise how precious breathing is. For me, every breath is a blessing.”
In 2008, the Tiana Leigh Foundation was established to support others living with rare diseases.
“The foundation was started to create awareness around rare diseases, but also to help people living with illness to not only survive but thrive,” Alta says.
Asked what advice she would give to the fragile baby once lying in intensive care, Tiana does not hesitate.
“Hold on – you’re stronger than you think,” she says. “You’ll still laugh, sing and dream.”
Nearly 19 years after doctors gave her six weeks to live, she is doing exactly that.
