East girl battling rare disorder in good spirits
Zulé Botha (6) is battling sclerosteosis characterised by bone overgrowth causing facial distortion and syndactyly.
A six-year-old Pretoria east girl suffering from a rare autosomal recessive disorder was doing well despite her condition.
Zulé Botha has sclerosteosis characterised by bone overgrowth causing facial distortion and syndactyly. The condition caused Zulé her first facial paralysis at 18-months-old, and has since seen her in and out of hospitals. Her hearing has also been affected.
In February, the little girl had the section of the skull that was pressing on her brain thinned to 2-3 mm from 18 mm. “She had her birthday on Tuesday, and she is doing very well with a beautiful smile,” said her mother Nelie. “Her hair growing back beautifully.”
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Nelie said even though the girl was doing well, she was in need of regular medical attention including medical procedures that are lined up.
“She will see her neurotology and otology specialist in November, for her yearly checkup,” she said. “Then the audiologist in January, to check if her hearing aids are still all good and also to do her yearly hearing test.”
The girl will also need to see a neurosurgeon in February to determine when her next operation would be to thin the front part of her skull. All of these procedures would require money that the family’s medical aid might not cover. Nelie said the family already had outstanding accounts from previous operations which the medical aid did not cover and a few smaller accounts like bloodwork.
“We have been blessed by a few donors who opened their hearts, but we still have a lot of outstanding accounts, unfortunately,” she said. “All in all it is about R80 000 that we are still busy trying to settle.”
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An estimated R60 000 might be needed for Zulé’s skull thinning in February, excluding any complications that may ensue. Members are urged to donate towards Zulé’s recovery and has thanked everyone who has contributed towards her medical costs. “All donations received go towards Zulé’s medical costs, care and needs,” she said.
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