This is Flynn. Flynn was diagnosed with congenital nystagmus at the age of 2. When Flynn was about 6 months old, our health visitor noticed something was not quite right. At first, we did not take much notice that his eyes vibrated and that he has a lazy left eye also. Our older son Alfie had nystagmus, but he grew out of it very quickly. We were also told he had albinism, but after being seen at Great Ormand Street he was diagnosed with congenital nystagmus. Flynn also has a strong head tilt to find his NULL point, which was always very alarming for us at first, but we are now so used to it it’s the norm. We are frequent visitors to the ophthalmology department and have an amazing team looking after him.
. He is now 5 and life is amazing. Flynn is only just realising that his eyes wobble and is asking lots of questions. The knowledge and information on this network has been amazing. It is making the discussions with him so much easier. He has the support from school and external people. Flynn has taken a real like to basketball recently and is doing amazing with it. Little slip ups and wobbles everyday but he is so resilient and it does not stop him what is so ever. Flynn is also light sensitive so has additional glasses to help with those brighter days. He loves telling people in class that he is super unique and special and that is why he sits closest to the board at school and all his friends just say it is okay Flynn. Such a little legend as is all of you on this group, thank you all.
