This is John Michael Moore. He is now 26. When he was born he had problems right from the start. He was admitted to our local hospital at two weeks old. They couldn’t find out what was wrong and he just got worse and worse, so at 8 weeks he was transferred to great Ormond Street hospital in London. He spent the next three months there. They found out he had microcephalic and he couldn’t tolerate his feed. Gradually over years they found out he couldn’t digest his milk. So he’s been tube fed a special pre digested feed all his life, he’s never eaten food. He also has low immunity and needed immunoglobulin infusions every week. He had these until he was 18, then they changed it to antibiotics everyday instead. He’s had lots of gut problem and needed colonoscopy and endoscopy every 6 months. His top part of his jaw and face didn’t grow as quick as the bottom jaw so had an operation to bring the top jaw forward and cheek implants put in. He also needed his breast plates removing and liposuction. He has had so many breaks in his legs we have lost count. Feels like he spent his whole school life in plaster or boots. Then when he was 20 they thought he had lymphoma and he had a lumbar punch. But didn’t show anything. Then at 21 he was diagnosed with bone cancer in his right leg. He underwent chemo. And lost his right leg below knee. He had sepsis twice while on chemo and had to stop chemo early due to the toxins building up. He was really sick and spent 6 weeks in intensive care. The chemo also damaged his heart so needs medication for the rest of his life. But it’s just another tablet. He is still having his blood checked regular as his T cells are changing that could mean lymphoma in the future.
Even though john has been through so much and is always in pain, he never moans and just accepts everything. He is so matter of fact. He’s so kind and caring. We love him very much and we are so proud of him.