In July 2020 both Ben (then 6) and Bobby (then 5) were diagnosed with Chronic Granulomatous Disorder (CGD). A very rare, inherited immune deficiency disorder meaning that the boys cannot fight off bacterial and fungal infections. 

In the January 2020 both boys were very ill after playing in rotting wood chippings. They spent a week in hospital needing oxygen with what was thought to be pneumonia. We were referred to the John Radcliffe and the Respiratory Consultant thought they had a huge allergic reaction to a fungus (Aspergillus) causing inflammation of their lungs. After a long course of steroids Bobby improved, but Ben’s symptoms persisted. The immunology team at the John Radcliffe suggested a blood test for CGD and both boys tested positive. Thankfully Tillie and Kitty do not have CGD. We were referred immediately to Great Ormond Street Hospital who specialise in rare immune diseases.

Ben has spent the last 8 months enduring up to 7 hours a day of intravenous anti-fungal medications for an Aspergillus fungal infection in his lungs and brain. He, thankfully, is doing very well and is now on an oral anti-fungal medication getting him as healthy as possible before having a bone marrow transplant in September.

CGD is a life limiting condition, but with the work and research done by the CGD Society children like the boys can go onto live a full life. Our Specialist Nurse based at Great Ormond Street Hospital, is funded by the CGD Society. She has been a life saver. With relentless hospital appointments, blood tests and worries she answers and deals with it all at the end of a phone or at the hospital.

Without the huge support from my family, especially my Mother who has stepped in and held my little family together whilst I was in hospital with Ben, always being at the end of the phone when I needed a cry, we would not have made it through. It seems very fitting that along with my sisters, Emily and Amy, My Mother Mary-Rose are joining me on this fundraiser.