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A nurse who recently completed her training says she credits her brother and son, who share a rare genetic condition, with encouraging her to follow her dream of becoming a community nurse.

Growing up, Carly Koncuk, from Acocks Green, was surrounded by doctors and nurses who took care of her brother, Anthony, as he battled chronic granulomatous disease (CGD), a life-threatening and life-limiting genetic condition.

Carly said: “Growing up was difficult with Anthony as his condition meant he developed numerous abscesses, one which resulted in having the lymph node on his neck removed.

“This left him physically and psychologically drained over the years, as well as with reoccurring pneumonias which left him with scarring on his lungs.”
CGD is a disorder that prevents the immune system fighting off certain infections and people 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. Problems can arise and lead to serious illnesses and prolonged periods in hospital. The condition is thought to affect around eight people in a million.

At the age of 16, Carly discovered that she was an X-Linked carrier of CGD, which meant if she ever became pregnant with boys, there was a 50-50 chance they would have CGD.

Thankfully in 2007, Carly and her husband Kadir had a healthy baby boy, Murat. It was only when Carly had her second child, Aydin, in 2014 that she fully understood just how difficult having a child with CGD was.

When Aydin was delivered, Carly’s mother, Debbie, noticed Aydin had extensive pus filled spots on his scrotum and knew at that moment Aydin had CGD. Aydin was taken away for immediate testing and, less than 24 hours later, it was confirmed.

Growing up with a brother with CGD, Carly knew the life-limiting illness Aydin would have to live with if treatment wasn’t started immediately and was determined to not let Aydin go through what Anthony had.

Conversations started to begin plans for a bone marrow transplant, the only known treatment for CGD.

In October 2016, Aydin had a successful transplant and after 11 weeks as an inpatient at Great Ormond Street Hospital, Aydin was finally allowed home.

“Following Aydin’s transplant, my house was transformed into a mobile hospital. Administering up to 15 medications spread across a 24-hour period, changing Hickman line and PICC line dressings and setting up Aydin’s infusions inspired me to follow a dream I’d had to become a nurse. It wasn’t until Aydin was fully out of the woods from his transplant that my husband Kadir gave me the push I needed.”

In September 2018, Carly completed an Access to Nursing Diploma and in 2019, began a three-year nursing degree at Birmingham City University.

However, shortly after starting, the COVID-19 pandemic began and due to being immunocompromised as a carrier of CGD and only 13% of her neutrophils working, Carly was told to shield. This meant she was not allowed to be in a clinical setting. “My first year went past in the blink of an eye, followed by my second being online due to shielding.

“By the time I was a third-year student, I had no idea where I wanted to work and felt very out of my depth on placements.”

Carly was given a placement in the community – and it is here where she finally felt part of a team and supported. “I loved caring for people in their own homes and enjoyed the range of multidisciplinary teams that I was exposed to. This felt like something close to my heart as growing up, I was constantly surrounded by district nurses and health care workers that cared for my brother and, in recent years, my son.”

Carly applied for a job with Solihull Community Services completion of her course and, in May 2022, she was given her final placement in the community.

“I spent 12 weeks on my management placement, followed by 16 weeks making up the hours I lost when I had to shield from COVID-19. I felt the extended hours that I spent in the community were meant to be.”

By the time she completed her degree in March 2023, Carly was ready to begin her career as a community nurse and she says she couldn’t be prouder of the journey she has been on. “It has not been easy, but I have been lucky enough to work with an amazing community team that have been so supportive throughout my journey from student to Qualified Nurse. The opportunities they have given me have been endless and I will forever be in their debt.

“They have all pushed me to the community nurse I am today and I am truly grateful to them all.”