Adolescence

Despite the pain and embarrassment associated with this condition Alex finished primary school and has fond memories of this period of his childhood. Unfortunately, the transition to secondary school was not as successful.

Coping with a bowel condition at any age is tough, though Alex found the impact of this on his health, growth and development made him a target for bullies and affected his confidence and wellbeing.

 As a consequence, his parents decided to home educate him, later finding him a place at a small medical education provision attached to a local school. Whilst he did well academically, achieving good GCSEs, Alex on reflection feels that his illness robbed him of a normal adolescence.

 At the age of 16 a serious infection proved the catalyst in Alex and his family’s decision to agree to a Bone Marrow Transplant. They met with immunology specialists in Manchester and at Great Ormond Street Hospital to discuss the procedure. Whilst it offered the hope of a curative outcome, the odds of failure were high because this was a rarely used treatment for CGD at the time.

Alex recalled:

“The BMT decision was really difficult. It was a looming thing, massive, a really big deal… I had heard about other children who had not made it through. When I was told that BMT was the last option available to me I was with my parents and brother Adam and I broke down in tears. Looking back that must have been hard for my brother because he also has CGD and must have been wondering when the same might happen to him”. 

Thankfully, Adam has managed his condition successfully and remains well today. During the interview for this feature Alex talked often of the support and strength his family gave him throughout his experience of CGD and that they made the BMT decision together over 6-12 months. Alex attributes the happy and stable aspects of his childhood to his caring, dedicated and emotionally supportive parents and a grandfather who helped him take his mind off feeling unwell to focus on art – a passion that would become a career in later life.

It was Alex’s mother who trained to administer the intricate medical care he required at home over fifteen years. When asked about her experience of discovering she was a carrier of the CGD gene, Alex explained that not a great deal was known about the impact on female carriers of the condition and tragically his mother passed away ten years ago from a rare auto-immune condition that he believes was associated with her genetic condition.

Whilst the decision to embark on a transplant at 16 was leaden with risk, Alex was so ill that he could see no other treatment option being successful by the time he was admitted for the BMT.

Alex remembers working on staying mentally resilient by focusing on a goal. The medical team had advised that it would take around four weeks to recover post-transplant, so Alex fixated on an upcoming Manchester United fixture with Arsenal that he wasn’t prepared to miss. He did get home for the day to see his team lose on penalties but was back in hospital soon afterwards.

Alex remembers seeing a psychologist when he was in junior school, but was not keen to engage in this when he was going through BMT, though it was probably offered to him.

He recalls:

“At the time, just getting through the medical treatment was enough, having to go through it all in therapy seemed too much to tackle, though looking back it would have been a helpful thing to have done.”