by Esté van Rensburg, Port Elizabeth, Eastern Cape Representative
Joshua Benjamin van Rensburg was born on 24 February 1999 and was a relatively healthy baby except for having asthma, sinusitis and regular bronchitis. At the age of four our ENT doctor removed his tonsils. Nebulizers were often used on a regular basis.
At the age of 9, he won a national tennis tournament for u/10. The next year he participated in the national tennis tournament in Bloemfontein. The second evening of the tournament, he started with a sore throat and was up all night with gastro. I took him to the doctor who reported that Josh was fine and could play tennis. The next day he collapsed on the court, could hardly move and had a temperature of 40 degrees. We rushed him off to the local paediatrician who immediately admitted Joshua. Within a matter of hours he lost his voice and was struggling to breath. He was placed on a drip, was given oxygen and diagnosed with pneumonia and gastritis.
He never fully recovered and landed in hospital with pneumonia 3 times within a matter of 3 months. After numerous blood tests, Joshua was diagnosed with hypogammaglobulinemia (more specifically CVID) and had to receive IVIG treatment (Polygam) every 4 weeks. He still regularly got ill with bronchitis and pneumonia. We eventually had to take him out of school and started home schooling. After seeing Dr. Monica Esser, she suggested Polygam every 3 weeks. He now receives Polygam every 3 weeks and does not regularly get ill. For two years, Joshua hardly grew (as this often stunts their growth), but he has now finally started growing after being on polygam treatment.
After doing 6 months research on the diagnosis, I insisted that they test Joshua’s sibling, Joel, seeing that there’s a 25% chance of the sibling having the same. To our shock, Joel was diagnosed with the same. Joel was permanently ill with sinusitis, bronchitis and struggled to breath as a baby and toddler. Nebulizers were a daily routine. In fact, he was worse off than Joshua and struggled with permanent ear infections, but seemed to have got better since the age of 10. The blood tests revealed that his B-cells are “faulty” and don’t produce sufficient IgG and IgA. He does not yet receive Polygam, but we are checking his Ig levels on a regular basis and have taken him out of school to prevent regular exposure to germs and illnesses.
At first, I tried to be calm and did so much research, joined every single Immune Foundation in the world and tried to keep their lives as normal as possible. Then, after two years, I had a bit of a breakdown, realizing that medically speaking there is no cure and they will have to live with this for the rest of their lives. My faith in God has picked me up and kept me strong and both boys have learnt that if they want to have a relatively normal life, they also need to take responsibility for their health. They walk around with hand sanitizers and use bactroban in their noses when going out. Their friends know not to have contact with them if they’re ill.
Both boys still play tennis and give 100% when they’re well. They’ve had to learn to listen to their bodies and not play tennis when they’re not feeling 100%. It is incredible how strong children are and how easy they adapt IF we as parents are strong and show trust and faith in their abilities.
Their school, Grey Junior, has been incredibly supportive with the home schooling and often allows the boys to attend school for short periods. Both boys still play tennis for their school. The SANBS (SAn National Blood Service) approached me to assist them with their blood drive. They used Joshua’s story and this has helped them to increase their blood donation numbers tremendously. Joshua’s school also participated in the blood drive in support of Joshua and others.
We as parents need to speak out and make others aware of this as we owe it to our children and others suffering from the same illness. If there is any one in the Eastern Cape whose children have a Primary Immune Deficiency Disorder, please contact me on 082 928 1057 or e-mail: email@example.com
Thank you to Joy Rosario and PINSA for all their support.