Our beautiful boy Charlie is now 8, he is a smiley cheeky chappy, loveable and determined which certainly helps given the challenges he lives with. Charlie, along with his twin sister Poppy were born at 30 weeks and spent much of the first year of his life in and out of hospital with various health issues. Finally at 18 months he appeared to be on the up, spending less time in hospital and was on the verge of learning to walk. Charlie woke that morning in considerable distress, reluctant to crawl or put any weight on his legs. He was taken to hospital where an MRI confirmed the worst and changed our lives forever. Charlie had a rare vascular anomaly on his spine called an Arteriovenus Malformation (AVM). Over time this had been growing, unbeknown to anyone, until a point where it ruptured, causing a bleed on his spinal cord resulting in in paralysis from the waist down. Charlie was immediately transferred to Great Ormond Street given the rarity of his condition and he remained there for 4 weeks. Since leaving hospital, it became clear that Charlies' needs would be ongoing, with physiotherapy and equipment being key to giving him the best possible chance at a normal life. NHS physio went from 3 times a week to once a fortnight in the early days, but this has now stopped altogether. Much of the equipment we have needed couldn't be provided by the NHS, so we therefore needed to raise funds for equipment, as well as further private physio sessions and hydrotherapy to try and give Charlie the same quality of life and opportunities as his twin and older sister. Increased physiotherapy will help prolong the inevitable need for spinal surgery to correct his developing scoliosis into the future. Charlie has been wonderful at adapting without the use of his legs, but frustration is clearly setting in especially seeing his twin Poppy doing things he cannot. This is why we are so passionate about giving him as many opportunities and possibilities as we can. In additional to the challenges Charlie has faced with his paraplegia, in 2019 he was dealt a second lifechanging blow, when after a spell of recurring illness, he was diagnosed with Acute Lymphoblastic Leukaemia. Thankfully, in 2022 Charlie completed his 3 years of treatment and 'rang the bell'. Fingers crossed his prognosis remains positive from a Leukaemia perspective
In the face of adversity, he remains truly inspiration to us and those he meets. He takes every challenge life has thrown at him, does complain and continues to solider own. He is our hero and the bravest boy in the world. Thank you for taking the time to read our story
