Chip in and help special needs child
To make his life easier, Luwan urgently needs an operation on his teeth, X-rays and a wheelchair, among other things.
Four-year-old Luwan Botha was diagnosed with 1p36 deletion syndrome in 2019.
According to the National Organisation for Rare Diseases, 1p36 is a chromosome disorder caused by genetic material deleted from a specific region in the short arm of chromosome one.
Luwan was born prematurely in February 2019 at 2.02kg and 49cm and was immediately put on oxygen and antibiotics for a lung infection as he had stopped growing in the uterus.
“In the early hours of day four, we were notified that he had stopped breathing and had to be resuscitated twice. All the necessary tests were then done to find out why he wasn’t responding to treatment,” said his mom, Angelique.
“An MRI, EEG and bone marrow and blood tests were done and sent to Potchefstroom. The MRI showed that Luwan had an abnormal brain and had started experiencing seizures.
“He was transferred from Linmed Hospital to Unitas where he was diagnosed with 1p36 syndrome.”
According to Angelique, Luwan is deaf and received his cochlear implant in 2020. He also wears glasses because of rotary nystagmus and high hyperopia and has low muscle tone that causes slow development with things like walking, crawling and sitting and fine motor skills
“Over the past two years, our family has suffered tremendous financial setbacks and we had to close our business and start a new one last year,” she said.
Luwan’s current needs include seeing a physiotherapist once a week for R600 per session, yearly check-ups for his cochlear implant and visits to his paediatric neurologist for R1 200 per appointment.
“His chronic medication includes Nexium, Pegicol and liquid paraffin as well as Respidol, Melatonin and Gaviscon. He also needs 24-hour care, which costs us R6 500 for his two caregivers.”
The family’s biggest concern at the moment is getting Luwan’s teeth fixed. The operation has to be done in the theatre as he can’t sit in the dentist’s chair.
“Our medical aid doesn’t cover the costs of the hospital procedure. This needs to be done urgently as he is in constant pain.
“The hospital requires an R33 000 deposit before he can be admitted,” she said.
The Bothas, with the help of the AGS Farrarmere Church, will host a golf day fundraiser on August 4 at Benoni Lake Club to raise funds for Luwan and plead with the community for support.
“We invite you to take time out of your busy schedules to join us in helping this four-year-old special needs boy get the help he needs. Your support would be greatly appreciated,” said the church’s Christa Van Jaarsveld.
The event will be a shotgun start for R4 000 per four-ball, including the green fees, carts and dinner, and sponsored holes will start from R1 000.
Donations are welcome. To make financial donations, use the following:
• Bank: Capitec Bank
• Account number: 213822055
• Reference: LW Botha
For more information, contact Angelique Botha on 074 249 2015 or angelique@minecoindustries.co.za
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