Adam was diagnosed with the rare genetic condition Chronic Granulomatous Disease (CGD) at the age of 15. In 2016, Adam underwent a bone marrow transplant (BMT) at the Royal Victoria Infirmary in Newcastle, which initially appeared successful. However, over time, the donor cells diminished, leaving Adam vulnerable to life-threatening infections, meaning he had to prepare for a second transplant.
Preparing for a second BMT presents significant challenges, both medically and financially. Adam’s treatment required him to relocate to Newcastle for approximately six months, incurring expenses for transport, accommodation, and daily necessities.
Second Transplant
A 26-year-old female donor was identified in late 2024 to enable Adam to have his second BMT, which he underwent on 26th February. Although the chemotherapy pre-transplant and the transplant itself went well, Adam is now unfortunately struggling with recovery due to sickness and a kidney virus.
However, the family is very pleased that Adam’s graft is holding up and he has 100% of the donor cells in his body. He is now +90 days post-transplant, and his family are optimistic.
Adam’s journey underscores the challenges faced by individuals with rare disorders like CGD and the critical role of community support in navigating these obstacles. Adam is a remarkably courageous young man who, despite facing immense challenges throughout his life, continues to confront this disorder with unwavering strength and determination.
Jeans for Genes has been fundamental in funding support for Adam and thousands of others affected by genetic conditions within the UK.