Your stories

The Presley family have been through a lot in Elliot's short life, but with the right support and medical care he is now thriving.

Thank you to Deven, Joshua, Amelia, Olivia, and Oakley for allowing us to share your journey. Your strength inspires us all.

Aydin's story has been a challenge, but he has continued to be strong and resilient and move forward with his life.

Having to undergo a second transplant, Adam tells his story of resilience. Adam was first diagnosed at 15. Unfortunately, donor cells from his first Bone Marrow Transplant died off. Here is his story of overcoming this and undergoing a second BMT.

The first patient to undergo and complete gene therapy for p47 CGD. An incredible story from first diagnosis as a very young child to becoming the first patient for a specific CGD-related gene therapy, Remi explains his story from the beginning and what the future looks like for him.

Gaining confidence and achieving goals - Alfie shares his remarkable story. We are so grateful to Alfie for sharing his story, how he overcame the struggles associated with a bone marrow transplant (BMT), and gained confidence to make friends and get into university.

How to live with and scold CGD in your late teens! and Helping me to help you – a story of two sisters with a love of STEAM. Thank you to Shannon and Wendy for each sharing their perspective on their family's journey with CGD and bone marrow transplant (BMT).

Blogging our bone marrow transplant (BMT) journey. Thank you to Bonnie for sharing with us her family's story as her son Bobby underwent BMT.

Being an X-linked carrier and how a stem cell transplant has opened up the world for us. Thanks to Olivia for sharing with us her family's story about life leading up to a diagnosis of X-linked CGD and a stem cell transplant.

My experience as a young person with CGD. Thanks to Noah for sharing with us his story of living with CGD as a football-loving teenager.