Seth is an 11 year old boy who was diagnosed with a Primary Immune Deficiency at a very young age after a 4½ hospital stay. This was due to him contracting Pseudomonas Aeruginosa and Rota Virus at Creche. The combination of both of these illnesses resulted in his body not being able to process milk so he was fed Chicken Broth for 2 months and given a dosage of Immunoglobulin and started to respond well. He was then released from hospital at 10months old. The fact that his system had been so weak was still a major concern for the Doctors at Tygerberg Hospital, Cape Town, RSA and they began to run numerous tests and was diagnosed with a Primary Immune Deficiency Subclass Unspecified Antibody Defect. During the following years he has had recurrent Otitis Media (Ear Infections), and infection in his heel bone, Pneumonia 3 times and many other illnesses. He was put on to regular Immunoglobulin treatment in 2005 and to date is still receiving it every 4 weeks. As his specific Primary Immune Deficiency is so rare we are not sure if he will ever out grow it or his system will learn to compensate. He only started formal education at 5 years old as he wasn't allowed to be with more than 4 – 5 children at a time due to susceptibility to illness. He adjusted well to school but struggled from the beginning with concentration and this was noted by his Grade R teacher. He then progressed to Grade 1 the concentration became an issue again he then began attending Occupational Thereapy and was put on a Ritalin trial. There was a marked improvement but not sufficient for him to progress to Grade 2 so he then repeated Grade 1. He was then diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and ODD (Oppositional Defiance Disorder). Grade 2 was then much better but Grade 3 he started to slip again but progressed to Grade 4 never the less. Grade 4 was a huge adjustment in itself for most kids but he struggled and was attending remedial classes for English and Mathematics. He failed the first and second term. In August he was hospitalised for Appendicitis and 2 weeks later for Pneumonia and was also not wanting to go to school as he was struggling to much. We then had him assessed by an Educational Psychologist who recommended that he attend Tafelberg School. I then asked Seth's school to do the necessary to have him transferred. They completed the necessary paperwork but when the District Psychologist came to the school he advised that Seth was not a candidate to attend Tafelberg School. He then failed the third term as well. We went to see Seth's Immunologist in October and she noted that his Lymphocytes were extremely low (he had never had this problem in the prior 11 years), she then asked for repeated tests to be done and again the Lymphocytes were extremely low. She then started routine tests to try to find out why his Lymphocytes were so low. At the beginning of November Seth was not feeling to well so we went back to Tygerberg for them just to check him out to be safe. I then mentioned to the Dr on call that he had tests done the previous week. She then went to check for the results and called me out the room to advise me that he had been diagnosed *************** (not willing to mention it here). We then discussed doing another test to make sure as well as checking my husband and myself. All three tests were done and the following week we found out that my husband and myself were negative but Seth was definitely positive. Then came more blood tests. He was found to have a CD4 count of 50 whereas you and I would normally be on about 700. He started treatment at the end of November and one week later they checked his CD4 count and found that it was down to 15. Seth has to unfortunately repeat Grade 4.
So 2014 has now started and we have 2 major fights on our hands.
1. Finding out how (if possible) he contracted ********* which according to a Dr at the Infectious Diseases Clinic at Tygerberg Hospital he has had for longer than 2 years and
2. To get Seth into Tafelberg School to get the necessary assistance he requires.
The Seth Jansen Fund is going to be used to pay his accumulating medical bills, seeing specialists (where necessary) for his ADHD/ ODD and getting any other medical assistance required as and where it is required.
Thank you for taking the time to read Seth's story to date.