The ocean is my favorite place in the entire world. When I see it—its immensity, its beauty—I feel immediately at home in the world. I believe that everyone should have the opportunity to experience the joys of the ocean. And that’s just what happened for Elliott Button, who has a rare condition called chronic granulomatous disease (CGD).
Before he was two years old, Button had faced challenges that many people could not imagine. According to reporting from WHAM, his condition required a full bone marrow transplant and chemotherapy at a very young age. Button is nonverbal and utilizes assistive technology to communicate. Despite his challenges, Button has remained upbeat, positive, and resilient; he brings joy to everyone around him, with his mother even referring to him as sunshine.
Recently, the Make-A-Wish Foundation granted a wish to Button and his family. After thinking about it, Button decided that he wanted to see the ocean for the first time. The day came—and Button could not be more thrilled. As soon as he saw the ocean, he immediately wanted to stand in the waves and touch the water. He told his family at the end of the trip that he was immensely happy. And in the end, that’s all his family wants: for him to live a joy-filled life.
About Chronic Granulomatous Disease (CGD)
Chronic granulomatous disease is a rare inherited primary immunodeficiency disease. Caused by NCF1, NCF2, NCF4, CYBA, or CYBB mutations, CGD prevents phagocytes from working properly. Phagocytes are a form of white blood cell that fight infections in the body. If the phagocytes cannot work properly, the person becomes increasingly susceptible to serious bacterial or fungal infections. As a result, people with CGD often develop lung, liver, lymph node, skin, stomach, and intestinal infections. Granulomas, or clusters of white blood cells, then form at the site of infection.
While it is possible to remain undiagnosed until adulthood, many people with CGD are diagnosed as children. This condition is more common in young males than females. Stem cell transplants, antibiotic treatment, and interferon gamma-1b injections may all be leveraged as treatment. However, additional research and treatment development is needed to improve outcomes.
Symptoms of CGD may include:
- Fever
- Chest pain when inhaling/exhaling
- Nausea and vomiting
- Diarrhea
- Bloody stool
- Irritated skin
- Swollen lymph nodes
- Persistent runny nose
