Hi I'm Kitt, I was born with congenital glaucoma in 2017. Most people don't realise you can be born with this rare condition, it occurs in 1 in 10,000 births in the world but the rates are more like 1 in 750,000 in Australasia.
I was very lucky to be born in Melbourne, this meant that I was quickly diagnosed and put under the care of specialist doctors at the Melbourne Children's Eye Clinic and the Royal Children's Hospital. Dr Ruddle my specialist and surgeon is my hero.
We started eye medications straight away and I had my first operation to relieve eye pressures at 9 days old. We tried several different procedures over the course of 5 operations, all within my first 4 months, but ended up with tube shunts in both eyes and an Iridectomy in my right eye.
Pressures seem to have stabilised for some time now with the shunts and nightly medication drops - celebrations!
I am such a happy, chatty little girl and have adapted well to my impaired vision (my hearing is incredible). It sure will be interesting to see just how my future will unfold.
Hi, it's me Kitt here again saying hello!
I thought it would be cool to update my glaucoma journey with everyone now that I'm a whole BIG 2 years old now.
I'm doing a good job of running the house just like most 2 year olds and I enjoy wearing my sassy pants at least some of the time, ha ha.
The last year has been an interesting one, a hell of a lot smoother than my first year (which let's admit, was pretty awful for everybody involved) thank goodness. At the moment my glaucoma is stable with daily eye drops. It's only now that I'm able to chat and talk your ear off (I can hold both sides of the conversation easy) that we have had a better idea of what I can actually see.
My eyes are a little complicated with what the glaucoma has caused - some large scarring, odd shaped and misaligned pupils (Anaridia), nystagmus (or "dancing" eyes), I'm short sighted and an intermittent eye turn (choose an eye, any eye... nope now it's the other one... nope switched again... Good luck Mamma with that patching).
We have been a lot more involved with Vision Australia in the last 6 months and my mum tells me they have been fantastic - we have been able to do a lot more involved vision tests since we have more time than our usual Orthoptist visits, they have lots of toys and just want to talk and play with me which is sooooo nice.
Combined with my own adaptations and strategies I seem to have good functional vision at the moment (we all know that with glaucoma it's always open to change lol), much more than the grown ups expected - hurrah!
I can see tiny balls of 100 and 1000s, a wide range of colours and most importantly The Wiggles and Dora the Explorer on TV!
My biggest issues are mostly with glare and depth perception and I do tend to trip, stumble or bang into things quite a bit. We are still fine tuning the best prescription sunglasses for me. It doesn't stop me running around full tilt, riding horses or my trike or playing with the dog though.
Music is my bag baby! I love to memorise and sing along to music - and not just kid songs, I like to sing to Van Morrison, John Mayer and The Killers too...
I am also VERY good at playing air guitar and playing my keyboard as well, if I do say so myself.
Kitt is doing a good job of running the house just like most 2 year olds, combined with her own adaptations and strategies she seems to have good functional vision at the moment, much more than the grown ups expected...Ailis (Kitt's mother)