Hey guys! It's been a while since I've sat and written a proper blog and I've got to say its nice to be back. I am so excited to share this little story with you because its probably the one that really made me think seriously about blogging in the first place.
As you all know I have always been very open about my vision and how it affects me. On Nystagmus awareness day in 2019 I posted something on my instagram to of course raise some awareness for the condition haha. In the post I explained what the condition was and added a video showing very clearly how my eyes moved. (for anyone who hasn't seen any of my previous posts, Nystagmus causes involuntary eye movement). I had a few comments and questions on the post as I expected and then a few months later I received a message from a friend of mine who had some questions about the condition.
My friend Lauren had messaged me with a few questions and concerns about her little girl Amelia, who was about 2/3 months old. They had noticed that her eyes were moving slowly from side to side and that she wasn't really looking at them. Lauren and I knew each other from secondary school and so were already friends on facebook and spoke from time to time to catch up and see how each other were doing. She had of course seen my post regarding the Nystagmus and had linked the video I posted to her daughters eyes. As any parent will tell you when you notice something isn't quite right with your child it is an instant worry. Wanting to know what was going on and get some more information Lauren dropped me a message and asked if I would be able to shed any light. I made it very clear from the start that I wasn't a professional hahaha! but I would of course give my best advice. She sent me a video of Amelia where you could clearly see her eyes moving, 'wobbling' as I call it. Because Amelia was very young I explained as best I could that there could be so many explanations for this happening but to me, it really did look like it could be Nystagmus.
My advice was to contact the hospital and set up a proper appointment for Amelia to be assessed and find out what was going on. At her age it would be very easy for things to be brushed off and shrugged away, especially by people that aren't familiar with the condition. Babies do not have an eye test at a young age unless there is reason for concern. For example both of my kids were given an additional check for Albinism before they were discharged from the hospital, with an eye test booked in for when they are a year old. This isn't something most babies have and so I knew it was something Lauren would need to ask for rather than waiting for the next check up. I tried to give some other advice of noisy and sensory toys to play with in the meantime to try and help Amelia enjoy playtime more and I wished them luck for their appointments and asked Lauren to keep me updated on Amelias progress.
Months went by and Lauren and I stayed in touch and kept me up to date with Amelia and how she was doing. December hit and at about 5 months old Amelia was diagnosed with Congenital Nystagmus and was able to start getting the real support she needed to be able to manage and adapt her life with her new condition. Amelia will be 2 in July and already has a pair of glasses to help with her general vision and the right set up and professional support she will need as she grows and starts going to school.
My parents had a fight to get my diagnosis. I struggled for a long time before I could explain to others what I was seeing and what I needed help with. To know that Amelia and her parents can get her all the things she needs from the start, means the absolute world to me. It was my instagram post that meant Lauren made the connection to Nystagmus and the advice I was able to give following that, led to a very early diagnosis. I have done my best to make it clear that I will always be there for both Amelia and her parents to give advice and personal experience on things. Just yesterday Lauren was asking if I struggled more with my vision in the snow, because Amelia seemed to have a little trouble. I do, and I was able to explain why that happens. I am able to put into words the things that Amelia can't and that way, as parents Lauren and Harry can be even a little more prepared and try things that might help.
As I said above I am in no way a medical professional but I really do feel that, by talking about the things we go through, it can reach and help people. I felt so wonderful knowing that I was able to help Amelia and hearing from Lauren how grateful they were to me really made me think about how many others I want to help. Thanks to them, I got the push I needed and started thinking about how I could help more. So here I am almost a year into blogging my life and all I can say is thank you. Amelia my darling you inspired me and I cant wait to see the wonderful little person you’re blooming into.
here is a little photo of the gorgeous girl that lit that fire for me
