Tiana-Leigh and Alta. Photos: Melkbos.net and provided
Alta Smith has a tattoo on the inside of her arm that states in curling letters her feelings about her daughter Tiana-Leigh. “Dare to thrive not just survive.” Two little birds flank it. Below it is inked Tiana’s name.
“This is what I decided when Tiana was born,” the soft-spoken pastor from Malmesbury says. “I told the other children: ‘You don’t look at the pipe, you don’t look at the oxygen tank, you look past it.’” Behind Alta’s back the oxygen concentrator that has had to accompany her and Tiana-Leigh to our interview in a restaurant, splutters. Next to her the 18 kg oxygen tank that accompanies Tiana-Leigh everywhere, stands at attention.
The tattoo was done in Tiana-Leigh’s handwriting.
Here’s hope
But things are looking up in the Smith household. “I am confident,” Alta says. “She’s got Dr. Fiona at Christiaan Barnard Memorial Hospital who cares about her. We finally know what she suffers from. And she has gained weight. In January she weighed 18.8 kg. Three weeks ago she weighed 10 kg more.”
Tiana-Leigh was born with an incurable lung disease and epilepsy; she was diagnosed with cancer when she was just more a year; and had to have nine months of chemo and have a kidney removed. She’s been in and out of hospitals every year of her life due to infections.
Tiana-Leigh at 4 months.
Two months ago something happened. The results of her DNA test came back from America. It stated that Tiana-Leigh suffers from ABCA3 lung disease, and not, as was thought, pulmonary alveolar proteinosis. Due to the misdiagnosis she has had to endure the trauma of three double lung lavages (a procedure during which the lungs are washed). The lung disease could have been treated had it been diagnosed at birth. The damage is irreversible, says Alta. That’s the downside. The upside is in front of me.
This 18 kg oxygen tank accompanies the young girl everywhere.
Princess dress
“I’ve always had strong faith,” Alta says. “A black woman visited Tiana-Leigh religiously in hospital when she was a baby. One day she brought along a gift of a Princess dress. ‘This is to give you hope,’ she said. ‘She will grow up and live to wear this dress.’” This year Tiana-Leigh donated the Princess dress to a young cancer sufferer.
Tiana-Leigh gets home-schooled. For the rest, Alta strives to make her life as normal as possible. The mom and daughter lived in Pretoria until the end of last year. There Tiana-Leigh would bake and sell cup cakes, and give the proceeds to the Wollie Animal Welfare foundation. Since moving to the farm she has started to make beaded key holders. She paints and swims and writes on Alta’s laptop which is easier for her than writing by hand, and rides horse.
Just a loving mom and daughter, after all. Photo: Melkbos.net
“I run along the horse with the oxygen tank,” Alta says.
Ditto when she splashes around in the pool.
“Nu-nu, who is your favourite singer?” Alta asks.
“Bobby,” she whispers. (Bobby van Jaarsveld)
“And Pieter,” Alta laughs. (Pieter Koen)
Tiana-Leigh’s downed two Cokes in the time that we’ve been talking about her epic medical battle. She has eaten a toasted cheese ‘n onion sandwich ever so daintily and now she needs to go to the ladies. Alta picks up the oxygen tank, and walks with her. If you look past the oxygen tank they are just a loving mom and daughter. And that sums it up, in any case.
Tiana-Leigh’s medical costs are high and ongoing, and her medical aid does not cover everything. People who are interested in helping her can contact Alta on the Tiana-Leigh Lung Foundation page on Facebook.
