Intro

It's time for me to start keeping a blog. I used to keep a journal when I was a teenager and this is the electronic progression right? Just a bit more public. I don't expect any readers at the moment, particularly as I am not planning on passing around the address. I've written a bunch of pseudo-blog posts over the last month so I am planning on publishing them as we go along. I guess it will make it all a bit jumbled but, hey, it's my blog - I can do what I want!

I'm in a sharing mood today and I feel the need to write about Charlotte and her nystagmus. Some days, I feel very quiet, others, I feel the need to share. If you know me in real life, you will know that I do like to talk about this stuff a lot so hopefully a blog will get some of it off my chest and relieve the burden on my friends and loved ones.

Charlotte, our second child, has Congenital Nystagmus, an involuntary movement of the eyes. This causes low vision. There are a bunch of websites explaining this a lot better than I can so go and Google it. (I might feel helpful and post some links later). In many cases, Nystagmus is Idiopathic (no known cause) but it is also caused by a range of underlying conditions. Charlotte's has been narrowed down to no cone function.

This is apparently pretty rare. Cone Dystrophy is the closest information I have been able to find. We are still undiagnosed as to her exact cone dysfunction and are awaiting a referral for gentic testing to, hopefully, narrow down the subtype and prognosis for her exact condition. We have been referred to "Professor Cone", as I like to think of him, the world expert on cones, and hopefully he will take us into his care. (Please, please: NHS, don't lose your funding, despite the financial woes of the British economy!)

I'll continue to post as my state of mind fluctuates and as we move through the world of specialists and services.