'I just want a painless future for my child' – Gauteng mom after daughter diagnosed with spinal scoliosis

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An X-ray of Priscilla's curved spine.
An X-ray of Priscilla's curved spine.

A mother’s nightmare – watching her child deal with pain day in and day out, with no immediate solution.

And when your child finally gets a diagnosis, it's something none of you have ever heard of. 

This is what happened to Leungo, who's 13-year-old, Priscilla, calmly asked her to make her a doctor’s appointment as discomfort from her back and waist was becoming intolerable.

The family could tell there was something not quite right with her back, but they did not know what it was until the visit to a GP.

Her mother shares that her daughter would complain about back and waist aches often, and as the time went on, she lost interest in all physical activities.

About two weeks ago, this mother learned that her 13-year-old daughter had spinal scoliosis – a sideways curvature of the spine. 

“Priscilla went in to see the doctor, she got an x-ray done, and received a diagnosis report. We were then referred to an Orthopaedic Surgeon who did a detailed x-ray which he used to explain exactly what is happening to Priscilla's body and what treatment would be best right now,” she tells Drum.

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Priscilla’s family had never heard of spinal scoliosis before, and the fear of the unknown has them worried. 

“As a family, we have been confused and worried. None of us has ever heard of the medical condition until it came knocking on our door. The worry was mostly how it will affect our child presently and in the future. But the support and prayers we have gotten so far have been amazing. Also learning of many other similar cases has made us realise that we are not alone,” the family shares. 

Priscilla is an independent and bright child who loves school with all her heart. In her spare time, she enjoys drawing by either using pencil and paper or drawing on her digital device. “You will hear her humming or singing as she gets creative,” Leungo says. 

Fortunately for Priscilla, she is at a growth stage of spinal scoliosis where a bracing treatment plus constant physiotherapy is recommended and not surgery.

However, the treatment is pricey, and Leungo has had to ask friends, family and South Africans for help. While they had an overwhelmingly good response, there were some who didn't appreciate what she was trying to do.  

“We had to seek a fundraising intervention from the community as the brace is an urgent treatment that we cannot fund from our pockets presently. Because of human nature, there has been some backlash on me creating a crowdfunding campaign. Some accusations were thrown around. But because I am doing this for my girl I focused on the positive and God intervened to make it a success,” the mother explains.

According to Priscilla’s doctor, the process is going to take two-and-a-half years of treatment and a significant healing journey. “We look forward to a normal and painless future for our young girl,” Luengo says.

They were aiming to raise for R50 000 and reached their goal. Priscilla is due to start the treatment soon, they say.

Leungo shares that Priscilla has signed up for dancing at school for when she's fully healed, and they pray that the treatment will be a success. 

Scoliosis of the spine

Often, it shows up in children or teenagers. Scoliosis is a sideways curve in your backbone. The angle of the curve may be small, large, or somewhere in between, but anything that measures more than 10 degrees on an X-ray is considered scoliosis. Doctors may use the letters "C" and "S" to describe the curve.

Signs and symptoms of scoliosis

If you have scoliosis, you might lean a little when you stand. You could also have:

  • A visible curve in your back
  • Shoulders, a waist, or hips that look uneven
  • One shoulder blade that looks bigger
  • Ribs that stick out farther on one side of your body than the other

Scoliosis may lead to:

  • Lower back pain
  • Back stiffness
  • Pain and numbness in your legs (from pinched nerves)
  • Fatigue due to muscle strain

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