“We have an outstanding doctor’s account of R10 000, in addition to the R4 500 we still owe for tests done at the hospital recently.”
“This is in addition to the R4 000 we spend on the special milk (Neocate) he drinks. We also have to pay for his daily antibiotics, vitamins and probiotics,” said 24-year-old Cherese van der Berg.
Last year on 25 July their baby boy, Lian Nieuwoudt, was born with a very rare genetic disorder called Thrombocytopenia with absent radius (Tar). “Those born with this syndrome do not have a radius bone in their forearms, and also have a very low blood platelet count. Lian has short arms and club hands, and once he is strong enough, he will undergo surgery to correct it, ” she said.
She added that she and Lian’s father, the 29-year-old Johannes (Buks) Nieuwoudt, were very excited about Lian’s arrival. “We both have boys from a previous relationship – four and five years old respectively – and we could not wait to welcome a new baby,” said Cherese.
Although each test and scan during her pregnancy indicated that they would have a healthy baby, nothing could prepare them for Lian’s birth. “From the start he had several health problems and was in and out of hospital on a regular basis. The doctors also recently discovered that Lian suffers from a immunoglobulin deficiency (low antibodies),” she said.
To ensure that Lian’s platelet count is not too low and to avoid a blood transfusion, he must visit the hospital for a thorough checkup every month. He is monitored by a dietitian to ensure that he grows satisfactorily, and is being treated by an immunity specialist as well. “With all the setbacks he had recently he lost a lot of weight, which he struggles to regain,” she said. He weighs a mere six kilograms. Lian has recently undergone a bowel biopsy and due to repeated ear infections he had to get grommets.
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Cherese added that because of all Lian’s daily and monthly needs, they are struggling financially to make ends meet. “In order to pay for the recent procedure, we had to borrow money. We still need to pay all the outstanding medical bills, and although we have a medical aid, it does not cover everything. We are responsible for all co-payments, ” she said.
The family desperately needs help and appeals to community members to find it in their hearts to assist them. “The company I work for has agreed to help raise money for him by hosting a golf day. The golf day will also help raise money for a 10-year-old boy with the same syndrome. We plan to have the South African Blood Service present at the event to enable people to donate platelets. All the arrangements have not yet been finalised, and once all the details are available, I will provide more information. I have also applied to register a non-profit organisation, but the process could take up to two months,” she added.
Should anyone be able to help, please contact Cherese on 061 497 6805.
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