On the 6 October 2014. We received a tiny little boy in our care. He was 4 days old. His mom gave birth at home with no clinic visits during pregnancy and was on drugs. When he arrived I noticed he didn’t look well. After plenty of Doctor Visits I finally found out he had water on the brain and congenital syphilis. He was treated with 6 months of antibiotics and went to see a specialist for the water on the brain. The fluid drained itself by the time that the doctors was scheduling his date to put in a shunt. Our special boy recovered well from both very well.
In 2016 (18 months old) our special boy started retaining water. After many days in hospital and plenty of tests, our special boy was diagnosed with Nephrotic syndrome. It has been a long road with him in and out of hospital. Kai has had two lots of chemotherapy. He takes tablets now to kill his white cells, blood pressure tablets, cortisone and plasma when needed. Every now and then Kai gets sick. He retains water and his kidneys lets out the protein in his urine. Kai has a very bad skin condition that is caused by his disease. This normally gets worse when he is sick or he gets an infection or flu, as he does not have a good immune system. It is an ongoing battle to try and keep him well. Kai is under Tygerberg Hospital where he get some of his medication and treatment.
Our special boy is 9 years old now and has an incredible loving nature. He is doing well at school besides not been able to wear school uniform, school shoes and socks (he goes in open shoes and a soft tracksuit), as his weight changes rapidly. His skin is very visible to his peers, but He presses on with a lovely attitude and smile. When he gets sick he does get upset and asks me ‘Why did God make me sick?”. Our special boy knows the answer before I can say “Because you are a very special little boy”.
Unfortunately our special boy needs are expensive. He has plenty of needs ranging from extra medication that we do not get at the hospital i.e. creams for his skin, bath stuff. Our special boy is also on a strict diet, low sodium and high protein which is very expensive. There is many things that he can’t eat, like process food, tin foods, sweets, chips and all the yummy treats that kids love. The food he needs is pricey. We also have to make sure we have enough sizes of comfortable clothing as he needs when he is retaining water.
Thank you for taking time to read about our special boy!
