From the age of five, Jim lived with a rare autoimmune disease which stopped him from going to school, making friends and even having birthday parties because he was so poorly. Then, a stem cell transplant from an anonymous donor gave him his life back. Recovery was tough, but going to Family Camp turned things around. Now, his future looks bright and he's making lots of exciting plans. In this blog, his mum Joanne shares Jim's story.
It felt like we were fighting a losing battle
When Jim was five he was diagnosed with a rare autoimmune disease which caused great big ulcers and sores on his body. Doctors tried various medications but nothing seemed to work. He was really poorly. He missed so much school, he didn’t have friends, he didn’t have confidence. It just felt we were fighting a losing battle. The worst time came when he developed sepsis and we almost lost him. But then, we were given a window of hope.
A lifechanging decision
In 2018 we were offered a stem cell transplant as a last resort. We discussed it as a family and we left the final decision to Jim. He wanted to go ahead with it. We didn’t know anything about Anthony Nolan or stem cell donation. When we knew we were relying on finding a donor, the fear started to set in. We saw stories about families waiting for years. Thankfully, there were three possible matches and we felt so lucky.
Recovery was tough, but Family Camp was his turning point
When Jim came home, we thought, ‘Okay, he’s had his transplant, he’s come home, it’s over now.’ But it’s not like that, recovery takes such a long time.
Jim found it very difficult. He started going to school in the July - about seven months after his transplant - and he hated it. We’d have arguments trying to get him to go. He struggled with the routine, he didn’t have friends... it was awful seeing how much he dreaded going. Then we heard about Family Camp.
We were a bit worried that he wouldn’t enjoy it but we got there and off he went with a group of children his own age, who had all been through various illnesses. A few hours later he came back full of energy saying, ‘Oh mum I was talking to this person and I made friends with this person...’ - it was amazing. He came back from camp a completely different person.
It was a turning point for all of us really, it gave us all a boost. We thought, ‘He’s got his life back. Let’s start living.’
Jim has a future now and he’s grabbing every opportunity he can
If you’d have asked me about Jim's future a few years ago… we didn’t plan more than a day ahead. We just didn’t know what was going to happen. Now, he’s got his whole future ahead of him. He’s written a ‘bucket list’ of things that he never thought he’d be able to do - he's been paragliding and he wants to jump out of a plane!
The transplant has been life-changing for Jim, and all of us. For a long time, we lived with the thought that either we’d end up sadly losing him due to his illness, or he’d just be so poorly that he wouldn't have any quality of life at all. But now, the world is his oyster and he’s grabbing every opportunity that he can.
If your child is between 0 – 17 and has had (or due to have ) a transplant, you and your family can enjoy a two-night residential stay full of activities, fun, and making new friends with those who just get it.