A SCARY DISCOVERY
Mother fights daughter’s rare medical condition - Adolescent Idiopathic Scoliosis
A 13-year-old Johannesburgborn Priscilla speaks to over the phone about her condition, a not so rare but littleknown condition called Scoliosis. As I listen to her voice recording, the soft-spoken lass does sound rather weary, which paints a picture of her suffering.
Voice Woman
For an artsy teen who is also an avid swimmer, Priscilla’s condition means that she enjoys few recreational pursuits. “My condition limits me from engaging in social and physical activities because I experience excruciating back pains whenever I do something for too long; even something as simple as standing up or even sitting down, I’ll have to lie down or lean my back on something for support. For instance, my school backpack hurts when it’s on for too long. So, I’m excited at the prospect of living without the pain, because it is frustrating,” she explains calmly.
Priscilla’s mother, 44-year-old Leungo, explains that roughly a fortnight ago, her daughter was diagnosed with Adolescent Idiopathic Scoliosis, a condition they had never heard of as a family. This was after she had noticed that her girl was always exhausted and repeatedly complained of back and waist pain.
“Her spine has curved by 70 degrees. We do not know the actual cause for this condition even though the doctors suspected it could be hereditary. If, in fact, we have a history of Scoliosis in our family, it went undetected. Unfortunately the spine will not stop curving unless there is urgent intervention to reverse the curve,” she explains.
From that moment, the doting mother has spent every waking minute to ensure her last-born, who is in Grade 7, receives prompt medical attention. It has not been a walk in the park, however, as the treatment procedure for Priscilla’s condition will
cost in excess of R50 000, inclusive of subsequent physiotherapy. “The orthocast specialist has recommended a specially made brace to start the reversing treatment. This will take two and a half years of wearing a brace and going to a physiotherapist,” she explains further, adding that the doctor has already taken measurements to create a bespoke brace to target identified areas.
As the cost of living surges amid the pandemic, with many either having exhausted or are without health insurance, the mother turned to her community for assistance - both back here at home and in South Africa where the family currently lives. And thanks to the power of the Internet, she has received overwhelming support; Good Samaritans rushed in to help. She says that the fundraising campaign was easy to create on an existing crowdfunding website. “The response was 97% positive and empathetic. However, as it is to be expected, there were pockets of resistance. There was a backlash from a few individuals who came with their own accusations but I did not let that derail me from the urgent reason for this campaign,”
The mother-of-two says social media posts shared by friends and relatives accelerated the number of donors. “In just 9 days, we reached our donation target. All Glory Be To God, who softened the hearts of my community and guided them to selflessly give. Good always trumps over evil thus there was more positive than negative,” she says.