The story of Alfie
Alfie was diagnosed with Aniridia at 6 weeks old. He was my first child and so unfortunately I didn’t pick up that there was something not quite right. My mother and other family members would constantly mention that Alfie wasn’t looking at me when I was feeding him which is apparently something that babies do when they feed and so I took him to the doctors quite a few times and mentioned that we were abit concerned and I was told told each time that there was nothing wrong with his eyes. The only thing I did notice is that Alfie used to look like he had a halo around his pupil and so we used to joke that he was a superhero. At his 6 week check I asked again about his eyes as my family were growing very concerned and I was told he was blind. My whole world fell apart. We were then sent straight to the hospital to be seen by the eye specialist and that was when we were told Alfie had something called Aniridia. We were told to go on google and find out everything about it. After reading up on it we were devastated. We were under the impression that Alfie wouldn’t ever really be able to see our faces. That he may have a kidney tumour. I blamed myself. I sat for hours on end wondering what could I have done to cause this. Eventually the CSVI got involved and they were so helpful. They came out to see Alfie and did sensory play with him, gave me advice on how to help Alfie with his visual impairment etc and explained that I hadn’t done anything wrong. We got genetic testing done which showed that it wasn’t hereditary it was unfortunately just something that had happened in my pregnancy and Alfie’s eyes had stopped developing and also he had an ultrasound scan that showed he didn’t have the kidney tumour either ( Wilms Tumour). Alfie was registered as partially sighted in both eyes and we started to go through life treating Alfie as if he were blind (constantly telling him exactly what was going on around him etc) but as he started to crawl we learnt that his eyesight wasn’t as bad as we thought. He would pick up tiny little crumbs off the floor etc which were amazed by. Alfie is now such a happy little boy who is so independent and to be honest acts like any other child his age. He runs and jumps and will try absolutely anything. His visual impairment doesn’t stop him from doing anything at all. He is now on Timolol eye drops for his left eye to lower the pressure and wears reactive lenses for his light sensitivity. He struggles to see things far away and struggles to pick something out of a crowded situation but he does absolutely amazingly well and I am so proud of him. I hope this helps someone that has also just been diagnosed with Aniridia or has a family member just diagnosed with it.