Alfie was born on the 24th of September 2011, he was 7 weeks premature due to spontaneous rupture of membranes. Although tiny and suffering from an infection and respiratory issues he held his own after birth in air and spent his first two weeks of life in an incubator. After 4 weeks of growing and learning to feed we took home a beautiful, healthy baby boy. On the 23rd of dec alfie was admitted to hospital with suspected spesis and spent his first Christmas in the HDU at Calderdale Royal. In the early hours of the 1st of January Alfie began to experience breathing problems and by 2.30am he was ventilated. The next 72 hrs were critical, our world was falling apart. Slowly over the next few weeks he fought hard and eventually was extubated. We got him back to full health and back home where he belonged. After a few weeks of good health and finally being able to enjoy our new addition Alfie's health started to fail again, he was struggling to feed, choking throughout. He was diagnosed with gastro osophagal reflux disease. After being admitted to hospital again with aspiration pneumonia alfie had an ng tube fitted and it was decided he would need a nissans fundoplication. This happened in August 2012 at leeds General Infirmary, he also had a gastrostomy tube fitted at the same time. The op was a complete success and Alfie came home symptom free 10days later.
Naively I thought this would be the end of his troubles. How wrong could I be. A twitch we'd always thought of as part of his discomfort from the gord became more noticable and along with the fact that at 10 months Alfie wasn't meeting any milestones his paediatrician decided a MRI scan of his brain was in order. 3 days after the scan I received the phone call that changed our lives forever. I was asked to attend an appointment the next day and told not to go alone. After a sleepless night we were informed that Alfie had frontal temporal lobe atrophy and demylination. I understood nothing, the doctor tried her best to explain but we left feeling numb and not knowing very much other than the next few weeks would be a blur of lumbar punctures and blood tests.
Foolishly I followed that need to know and googled the life out of his symptoms and convinced myself my beautiful boy was going to die. Something his doctors could not definitely say wouldn't happen. We waited and waited for results to come back and slowly they did. Leukodystrophy was thankfully ruled out along with all the treatable metabloic conditions we'd began hoping it would be. And here we are now Alfie is 3 and we're still no closer to knowing how or why or what his condition is. His medical team manage his symptoms and we have just join a whole array of genetic studies hoping to get some answers.
Health wise at the moment Alfie is stable. He undergoes daily physio at home, weekly physio at our local child development centre and has new been walking with the aid or afo splints ans a kaye walker for just over 6 months, something they told us he'd never do. Every day with alfie is a blessing he is a happy determined little boy hell bent on enjoying life. He steals everyones heart. We are currently awaiting a date for his 1st botox injections in his hamstrings and a date for surgery to correct his dysplasia.