East girl’s cry for ‘normal life’
She battling sclerosteosis, an autosomal recessive disorder characterised by bone overgrowth which has seen her in and out of hospitals.
The family of a five-year-old girl, suffering from a rare genetic disorder wants to raise money to help her live a normal life.
Zulé Botha is battling sclerosteosis, an autosomal recessive disorder characterised by bone overgrowth which has seen her in and out of hospitals.
The excessive bone formation can result in distortion of the face, gigantism and entrapment of the cranial/spinal nerves with consequential recurring facial paralysis and hearing loss.
Zulé, who lives with her family in Constantia Park, had her first facial paralysis in May 2016, at 18-months-old.
She was officially diagnosed with the disease in 2017.
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A friend of the family Paula Louw said the girl underwent four major brain surgeries between 2017-2019.
“Luckily without any complications,” she said.
“She spent close to 40 hours in the operating theatre and had long hospital stays.”
An operation could be anything between six to 11 hours
In September last year, an audiologist found that Zule’s hearing had decreased in both ears because of the little bones in her middle ear, which had thickened.
Since then she had to use hearing aids.
“She also has a small hole in her eardrum.”
Louw said Zulé then had to undergo surgery to take out wax plugs, and also to see whether she needed new grommets and if there was any moisture build-up.
When she went for her annual MRI scan in October, the family received the bad news that she would have to undergo cranial surgery during which sections of her skull would be taken off to thin it out.
“On the right-hand side it is already pushing on her brain,” Louw said.
The grade R learner was scheduled to undergo surgery in November, but the operation was called off after complications arose.
“Her chest x-ray came back showing pneumonia in both lungs. The white blood cell count was only 4 000 while it is supposed to be between 16-17 000. She also had a red throat, sinus drip and both ears had a terrible infection,” said Louw.
After another medical assessment, a date for surgery was set
Louw said the girl needed the operations to live a normal life, as she loses facial expression and movement in her face with each paralysis.
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“It can be as much as 20-25% each time. She had three on the left and three on the right side already,” she said.
“The hearing aids made a huge difference in her daily life, especially in school.”
Louw said all the procedures Zulé went through were costly and the family desperately needed financial assistance.
By raising funds, Louw hoped more awareness would be raised about the disease.
“It will also make a huge difference in this brave little girl’s daily life,” she said.
“She is such a bright child with so much to give.”
You can follow Zulé’s journey on Facebook: Zulé Botha’s Journey – Kiki
Funds raised will be used towards Zulé’s current and future medical as well as outstanding medical costs.
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