Jared

Jared was constantly unwell. He had repeated viral and bacterial infections and was in and out of hospital. It was a frightening and confusing time as we tried to understand why our little boy was always so poorly.

After around a year and a half of investigations, we finally received his diagnosis. Jared was diagnosed with Chronic Granulomatous Disease (CGD) in February 2024, when he was just 1 year old. CGD is a rare and serious genetic condition that means his immune system doesn’t work properly, leaving him highly vulnerable to frequent and potentially life-threatening infections.

It changed everything for us. Once we knew what we were facing, Jared was started on daily antibiotics and antifungal medication to help protect him as much as possible and reduce the risk of serious infection. These medications have become a vital part of keeping him safe day to day.

Our whole lives shifted. We became more cautious, more protective, always alert to even the smallest signs of illness. I also lost my job due to a lack of understanding around Jared’s condition, and as a family we struggled to process everything we were going through. The emotional toll was huge. His dad and I found it incredibly difficult to cope, and over time we drifted apart. We now parent separately, but we both continue to do everything we can to put Jared first.

Unanswered questions

There were so many unanswered questions, and so many fears about what his future might look like. Because CGD is genetic, I found myself blaming myself, trying to make sense of something that was never my fault but still weighed heavily on me.

Despite all of this, Jared continues to show incredible strength.

In April 2026, Jared is currently undergoing chemotherapy in preparation for a stem cell transplant. This treatment is life-changing. The stem cells, donated by his dad, will replace his faulty immune system and give him a new one, and one that we hope will protect him from the infections that have shaped so much of his early life.

Thanks to diagnosis, specialist care, and the incredible support around him, Jared now has the chance of a much healthier future. A future where his body should be stronger, more protected, and better able to fight infection and viruses.

Our journey has been one of fear, uncertainty, and resilience but right now, we are holding onto hope for what comes next: a life where Jared can simply be a child, without his body constantly fighting against him.