At the age of five years old, James was diagnosed with a rare autoimmune disease. Despite numerous visits to specialists in various hospitals, James’s illness could never be properly diagnosed.
The disease had a huge impact on James’ childhood, with symptoms that caused him great pain. James’ mother, Joanne explains, “James suffered from enormous mouth ulcers, his lips were often covered in sores, which would make his mouth seal shut, so he couldn’t eat or drink. He also had sores on his face and limbs, to the point where his legs were bandaged from his ankles to his groin. They were so severe that his skin would peel away when his bandages were changed. To even walk was agony for him. Simply getting out of bed to go to the toilet was excruciatingly painful. What normal children take for granted, James has never had.”
Bouts of these symptoms would last up to three or four months, but there were no real patterns to how often they returned. Since James was diagnosed at five, his attendance at school was sporadic, and he therefore struggled with friendships.
“Two years ago, James had told me that he wanted to end his life,” said Joanne. “He had experienced so much pain and illness. As a parent, you can imagine that this is agony to hear. His life had been controlled by this illness. He had never had a birthday or a Christmas, without being ill or suffering. All his memories had been ruined by illness.”
Undergoing a bone marrow transplant
It was in 2018, that doctors decided that a bone marrow transplant was needed, but it was uncertain whether the operation would be a success. “The transplant was horrendous- James couldn’t eat, he was being fed through tubes, he lost his hair and was so poorly. Before he went into the operation, he was so worried, that he wrote a list of wishes for things he wanted at his funeral. I can’t tell you how traumatic that is for a parent to read.”
After the operation, James and his family were absolutely delighted to learn, that the transplant was a success and that it had eradicated the disease. At the age of 15, James was clear of the symptoms he had battled with for 10 years.
However, James’ illness had taken its toll. He had never attended a full year at school, had few friends and the impact of this meant he was withdrawn, isolated and very under confident. The disease and treatment had also affected his growth, therefore he looked many years younger than his peers.
It was during a visit to the hospital in 2019, that Joanne was given a leaflet about Over The Wall camp by one of the nurses treating James. Going to camp seemed to be exactly what James needed, and so Joanne applied for a place on the ‘Anthony Nolan Family Camp’ and was offered a place later that year.
“I can’t tell you how fantastic camp was- for us all.” said Joanne. “James did things at camp he thought he couldn’t do any more. Camp really challenged him and the encouragement from the staff and volunteers gave him this renewed self-confidence, it was out of this world. I can’t praise them enough for the time and the effort they put in with the campers.”
“James’ life has come on in leaps and bounds and going to camp was the turning point. It had such a massive impact on him. He was suddenly able to talk to other children who had also experienced illness, some of which were 4-5 years down the line after a bone marrow transplant. This really made an impression as it showed him, this was just the beginning. His confidence was boosted, and through camp activities, he became aware that he could do things.”
“When we got back from camp- he happily went straight back to school. Before that, he was struggling- he didn’t want to go, in fact he didn’t want to get out of bed. He also started to go out with friends on a Saturday night. Camp really helped with all of that.”
“His sister and brother also attended and they too flourished. His younger brother, who has learning difficulties and epilepsy, doesn’t enjoy change- but at camp, he was like a different child. He usually needs me with him, but at camp he was off- and just said ‘bye mum – I’m off- see you’!
“And of course, it was nice for me to have a break. My partner and I don’t go out much, so at camp- it was really lovely to just go off for a coffee and speak to other adults. It also felt like a great break for us!”
“James now plans to start college in September and has even developed a three-year plan. He is on a mission to make memories. He has a bucket list and wants to do things, like ride in a helicopter and go abroad. Since camp, he aims to make every day one to remember.”