Anle Pienaar

Anle was born on a wonderful afternoon in Sandton Medical Clinic on the 3rd of January 2000. She was a beautiful healthy baby girl weighing 2.7kg. She is the youngest of four children.

She grew up as a healthy baby with minor infections and normal colds and flus.

Anle was breastfeeded until she was 2years and 8months old. After that her infections got the better of us and she was a chronic ear infectious child and she had numerous bronchitis cases. With all these infections, her specialist decided to take out her tonsils. After the operation Anle’s speech was never the same again, unclear and she was speaking through her nose.

We applied for her to go to Eduplex School in Queenswood and she started in 2004. In was in that year when she started doing ballet that we noticed that her balance was not normal and occupational therapy was suggested. We then started occupational therapy with Riana Henning and all went well.

With her last admission for pneumonia, blood test were taken and it showed that her igg was very low, the pediatrician thought that the lab made a mistake and she had to go back for another set of blood tests to see what the results are, it came back and the igg reading was 0.02 – it should be between 6 and 16.

We were relocated from Pretoria to Riebeek Kasteel and moved to the Western Cape at the end of 2004. The infections never stopped and I was looking for a pediatrician as soon as we settled down. All that blood testing were done again and her pediatrician suggested that we see Dr Monica Esser. She try to explain the low igg, and the negative side of a low immune system and then suggested that Anle get POLYGAM 12gr every 4 weeks, her levels were also to be checked on a monthly basis.

Anle IS INFECTION FREE because of POLYGAM. Unfortunately her balance seems to get worse by the day. At the end of 2006 I stopped her from participating in monkeyNastics because her balance was so poor and we again went to her pediatrician to help us find a cure. MR scan was done, eye test were done, hearing test were done and nothing seem to be the root of her problem. Monica then said that there will be blood test done and that they are going to look at the generic side, needless to say, in June 2007, we were called by our pediatrician and was told that Anle is an AT sufferer and was told what the prognoses will be and that she will be in a wheelchair when she is 10 and after that no one knows. WE KNOW THAT GOD ALONE CAN SHORTEN OR LENGTHEN ONCE’S LIFE… AND that is what keeps us going from strength to strength and enjoying every day to the best of ANLE’s abilities

Luckily, Anle is a healthy child because she is having POLYGAM every 4 weeks and we live life to the fullest….We took her out of Piketberg school and she started in 2008 in Paarlschool in Brackenfell for children with a disability. At the moment Anle is only walking on her legs with my assistance, otherwise she is in her wheelchair, she has a very slow eye movement, which makes reading very complicated and difficult and she is also struggling with writing because of the movement of her hand and eyes. She also speaks slower than normal and shorter sentences that normal…. Her head movement is also more prominent than a year ago so eating, brushing teeth and doing simple things are becoming difficult now.

“WE ARE A VERY CLOSE FAMILY”