His mum, Julie, says that he was not only ‘friendly and popular, caring and polite’ – he was also ‘never shy in giving his view on things!’
Ross sadly passed away on New Year’s Eve 2019 -at just thirty years old- after a long battle with Adult PID. PID is an umbrella term for immunodeficiencies in adults, meaning conditions that affect the body’s immune system and its ability to function properly.
From around eighteen months old, Ross developed frequent infections and was even admitted to hospital several times with pneumonia. At the age of four, he was diagnosed with CVID, or Common Variable Immunodeficiency. This immune system disorder results in low levels of the proteins that your body develops to defend itself against infections. This leads to having frequent infections, which your body can struggle to fight off.
Ross did not allow his diagnosis to define him, going on to thrive as a child, teenager, and young man.
Julie describes Ross as ‘ambitious and motivated’ – as well as a daredevil, who gave his family ‘a few grey hairs with his love for thrills and speed!’ She says that, above all, he was a kind, compassionate individual, who ‘wasn’t afraid of showing his love for family and friends.’
The main symptoms of CVID that Ross faced were respiratory, and this continued to develop as he grew older. In 2011, when Ross was twenty two, tests on his liver revealed unusual changes. In 2014, a liver biopsy was performed, and confirmed that these changes were a recognised complication of CVID.
During the next few years, Ross’ symptoms continued to progress and worsen. He developed new symptoms in January 2019, which included intense fatigue, sweats, and leg swelling- also recognised complications.
After further investigation, it was confirmed that Ross had developed Acute Autoimmune Hepatitis, which is a rare complication of CVID. There are currently no available treatment options.
Ross’ symptoms continued to worsen, and, finally he was told that there were only two remaining treatment options: a liver transplant, or a bone marrow transplant.
Unfortunately, a liver transplant wasn’t possible – and so the taxing search for a stem cell donor began. A 9/10 donor match was eventually found, and Ross began to prepare for the transplant. Due to Ross’ underlying health issues and damaged liver, he was warned that it would be a risky procedure.
Despite the risks, Ross made the brave decision to go ahead with the treatment. He was admitted to Ward 33 at Newcastle’s Freeman Hospital on the 5th of December 2019. He underwent the transplant a few days later, on the 11th, and was full of hope and optimism for the future.
Unfortunately, the procedure had taken its toll. The chemotherapy and drugs required before and after Ross’ treatment, when combined with his previous organ damage, led to a rapid decline in Ross’ health. He was admitted to the ICU but, sadly, his condition continued to deteriorate. He passed away on New Year’s Eve.
Julie’s introduction to Bright Red was through the posters on display in Ward 33 during Ross’ stay there. She says that the care Ross received on the ward, which Bright Red helps to fund, was incredible: ‘They were absolutely amazing in the care, kindness and support they gave to Ross, and to ourselves as a family. They could not have done more, and Ross described the staff as diamonds.’
Julie is now fighting to raise more awareness of Adult PIDs – especially to research teams and professionals such as GPs, who she says are often the first point of contact for people experiencing unusual symptoms.
Following Ross’ death, Julie has been determined to give back to Ward 33 and the people there who supported Ross when he needed it most. After they received a significant donation in Ross’ memory, Julie and her family chose to generously donate to Bright Red, to help us to continue our lifesaving work in the North of England.
Julie says, ‘Ross was to us and to many others an inspirational, positive young man who was incredibly brave. “One in a million” has been said so many times. We as a family will always be immensely proud of the man that he became.’