Our Brave Boy: Kaisyn’s Story of Courage

We welcomed our beautiful baby boy at 40 weeks. He was perfect, just as we imagined. At only 6 weeks old, he was admitted for a bleeding gut. Little did we know that his health battle was far from over.

At the age of 2, our son woke up in the early hours of the morning unable to breathe. This resulted in us rushing him to casualty every two weeks as doctors worked to stabilise his vitals. After many doctor visits and scans, he was diagnosed with Bronchomalacia, which is a condition where the airway collapses. This led to recurring lung infections, and he needed home oxygen on standby to support him during these attacks.

At age 3, Kaisyn became severely ill and was admitted for three weeks. After numerous tests and increasing concern, he was diagnosed with a rare immune deficiency called Hypogammaglobulinemia, which means he has severely low levels of antibodies in the blood. This puts him at great risk of life‑threatening infections. He has already battled pseudomonas in his lungs, which required weeks of treatment through a portable home IV drip even after he was discharged.

Every three weeks, Kaisyn had to be admitted for antibody infusions. These have now been changed to weekly home infusions administered in his stomach.

Medical Aid covers only part of this very expensive medication, leaving us with significant shortfalls for his consumables and the remaining balance of his weekly treatment.

Kaisyn is now 6 years old and doing Grade 1 this year, yet his medical journey is still ongoing. He needs constant blood tests to monitor his levels, as he is at high risk for cancer. Two months ago, his blood results indicated the need for a liver biopsy. This led to the heartbreaking diagnosis of liver disease. He has lost 50 percent of his bile ducts, had liver fibrosis, and had ground‑glass hepatocyte cells present.

This has been a long and painful road for both him and us, and we are still trying to determine the cause of his liver disease. This means specialist bills, tests, scans, biopsies, and ongoing procedures, all of which come with co‑payments, shortfalls, and additional expenses that Medical Aid does not cover.

We now find ourselves turning to you for help and sharing his story. Kaisyn is not only fighting a rare immune deficiency, but he is also fighting a rare liver disease. Both conditions are equally critical to his survival.

With heartfelt gratitude,

Angelique and Nicholas 🩵