Meet Elliot Presley
Benefiting charity: cgdsociety.org
Ten-year-old Elliot is helping to raise awareness of children’s genetic disorders with the Jeans for Genes annual fundraising day. This year, the Jeans for Genes Day campaign week runs from Monday 14th-Sunday 20th September 2026 and invites everyone to wear their jeans to work or school in return for a donation www.jeansforgenesday.org
Synopsis: Elliot, ten, was born with the rare genetic disorder Chronic Granulomatous Disorder, which is inherited and affects the immune system. The disorder prevents the immune system fighting off certain infections. Those with CGD carry a faulty immune system gene, which means that white blood cells, called phagocytes, don’t work properly. As a result, CGD-affected people tend to get frequent bacterial and fungal infections, and need to take daily medication to stay healthy.
Elliot’s parents first found out about his condition after a bout of illnesses when he was less than a year old. Chronic Granulomatous Disease (CGD) is a rare genetic disorder that affects the immune system, meaning the body struggles to fight certain infections. Hearing that their child had a serious and lifelong illness was overwhelming. Like many parents in that situation, they suddenly had to learn about complicated medical terms, treatments, and how to keep Elliot safe from infections.
CGD affects the way certain white blood cells work in the body. Normally, these cells help protect us by destroying harmful bacteria and fungi that enter the body. However, in people with CGD, these immune cells cannot properly kill some germs. Because of this, infections can develop more easily and may become more serious. People with CGD are especially at risk of infections in areas such as the lungs, skin, lymph nodes, and liver. The condition can also cause inflammation in different parts of the body. CGD is genetic, meaning it is inherited through family genes, and it is usually diagnosed in early childhood after repeated or unusual infections.
Much of Elliot’s early life involved spending time in hospital and attending regular medical appointments. His parents had to work closely with doctors, nurses, and specialists to make sure he received the right care. Managing CGD meant being extremely careful about infections and making sure Elliot took the medicines he needed to stay healthy. These medicines often include antibiotics and antifungal treatments to prevent infections from developing. The hospital environment became a normal part of life for the family, which was often difficult and stressful.
Eventually, Elliot’s mum was contacted by the hospital to say that there was a match for him to receive a bone marrow transplant. Although this is not always considered a complete cure for CGD, there have been many cases where people’s health and quality of life have significantly improved through this treatment. A bone marrow transplant works by replacing the faulty immune cells with healthy ones from a donor, allowing the body to fight infections more effectively. The doctors explained that the transplant could give Elliot a much better chance at living a healthier life.
Support from healthcare professionals and organisations played an important role in helping Elliot’s family cope. The CGD Society’s Clinical Nurse Specialist helped guide them through hospital visits and explained complicated information in ways they could understand. This support made a huge difference, especially during the early stages after Elliot’s diagnosis, when everything felt confusing and uncertain.
Another important source of support came from connecting with other families who were going through similar experiences. Being part of a community of parents who understood the challenges of CGD helped Elliot’s family feel less alone. They were able to share advice, talk about their worries, and learn from people who had already faced similar situations.
Despite the challenges, Elliot’s story is also one of hope and resilience. As he has grown older, he is now able to enjoy many of the same activities as other children. He spends time with his family, plays with his sibling, and enjoys hobbies such as music.
Elliot’s journey highlights both the difficulties and the strength involved in living with a rare disorder. His family has had to face fear, uncertainty, and many medical challenges. However, with the right support, knowledge, and community, they have been able to adapt and build a positive life together.
Overall, Elliot’s story reminds us of the importance of awareness, support networks, and medical care for families dealing with rare conditions. It shows that while a diagnosis like CGD can be life-changing, it does not define a child’s entire future. With love, support, and determination, children like Elliot can continue to grow, learn, and enjoy life.