The day Tiana-Leigh Farmer was born, doctors said she’d be dead within eight weeks.
Born with a rare lung disease, ABCA3, the odds were stacked against her, but with a longing to thrive and “not just survive”, the Table View girl continues to defy the “death sentence” handed to her.
Tiana-Leigh wears an oxygen mask 24/7. The longest she can go without it is 45 seconds.
To avoid running out of air, the 12-year-old has a BiPap breathing machine, oxygen bottles, a generator and an inverter in her mother’s car to plug in her oxygen concentrator.
Driving to the shops is like the “Groot Trek”, says her mother, Alta Smith, but she is not intimidated by it.
In their home, Tiana-Leigh walks around with a transparent plastic tube feeding her air. The tube is 20m long and reaches throughout the house including the garden.
She had her first open-lung biopsy at three weeks old and her second in 2017. At 18 months she was diagnosed with kidney cancer and underwent surgery to remove the kidney.
At eight, she was diagnosed with a heart condition, pulmonary hypertension. She’s also had three whole-lung lavages to “wash out” her lungs.
“She was also born with severe epilepsy but has outgrown it,” says Alta.
Asked how she survived perilous times, she points her finger up in the air and says her strength comes from God.
“It has a lot to do with your mental attitude as well,” she adds.
Knowing how precious each year is with her child, she has celebrated it with a “wish list”.
On last year’s list, Tiana-Leigh’s requests included, among other things, attending art classes and having a spin around Killarney’s race track.
Originally from Zimbabwe, Atla moved to South Africa where her baby could get better medical attention.
When load shedding reared its ugly head a few weeks ago, Tiana-Leigh used the generator to power her oxygen machine.
Alta says she came across a post on a Facebook page of someone complaining about the noise of the generator.
She responded by explaining the situation and although, she says, there are one or two people who still don’t get it, she was overwhelmed by a sudden outpouring of support.
A good Samaritan gave them a new generator while another sponsored two fire extinguishers.
Someone also offered to build an enclosure for the generator to help curb the noise.
“God took a bad situation and turned it into a blessing. It’s reduced me to tears on more than one occasion. The support has been so amazing and it’s coming from people who don’t even know us,” she says.
In 2006, Alta started the non-profit Tiana-Leigh Lung Foundation to raise public awareness around children suffering from rare and life-threatening diseases.
The NPO, she says, gives emotional support to families and, where it can, also raises funds for medical expenses.
“I know what it’s like to not have money to pay bills or buy food and to not have support,” she says.
Atla is still paying hospital bills and has to cover medication costs every month that are not covered by the medical aid.
This year she plans to give talks at schools about the foundation and also do fund-raising for families with children who have rare diseases.
“Tiana-Leigh has grown into an amazing, strong young lady, giving so much hope and inspiration to everyone that crosses her path.”
Find out more about the Tiana-Leigh Lung Foundation on the Facebook page or email Alta Smith at firstname.lastname@example.org