making magic happen ❇❤

When I was born, the film around my eyes had not closed, so I have deep scars at the back of my eyes.



As a child they measured my vision. I had 20% vision in my right eye and 5% in my left eye so my left eye was always considered  to be my blind eye as it was not much use.


In 2017 my shunt wasn’t functioning properly, but we had trouble getting in touch with my doctor. In june that year I blacked out one evening causing me to fall and break my leg. I was in hospital in a cast for 6 weeks and then a boot. I had two carers for ten weeks. I gave back the hours in September and the first evening with one carer I fell and split my head open. The cimmunuty nurse advised me to go to the hospital. Nobody can understand why, but the doctor refused to do a CT scan.


I managed to get a letter to my consultant and my dad to get me a MRI scan in October. The doctor never replied to me. I was having blackouts with my vision and seeing strange flashing lights,  In November my vision got so bad the only way I could communicate was if people traced the letters on my face. My vision in early november my vusion had gotten so bad that i got an emergancy appointment  in the eye and ear, they said that my optic nerves were massively  swollen which for me is usually a sure sign that my shunt isn't working so they gave me a letter and sent me to a&e, because of the letter I finally got a doctor to listen to me and I had a CT scan (the result looked like a Christmas tree, so much activity and pressure in my brain).


They could see that my shunt couldn’t function properly. I had surgery that night, but it was too late. My optic nerve had taken such a hammering that it got damaged and I will never get my sight back in my right eye. That left me with a tiny piece of vision in my left eye. Last year I got a ulcer in my left eye that just would not heal, it was in the centre of my vision it got so bad that they had to sew my eye closed for 3 and a half months in order to save the eye, so there for this left me in total darkness stuck in bed deaf and blind , I had been through my worst nightmare many times, every  time it happens something worse becomes my new nightmare  and unfortunately  that happens to, they reopened my eye in March and thank God I can still see a tiny tiny bit 5% that tiny piece of vision I have left is always at risk and I want to live as much as I still can while I have that chance. 


I was diagnosed with NF2 when I was 13 years old. In the 20 years since I have had 42 surgeries, the majority of which were on my brain and spine. Despite the amount of surgeries I’ve had, I still have many tumours, some of which are inoperable.


I know if you look at me , you wouldn’t think there is much wrong, but it is mostly inside the body. It ravages the nervous system. Tumours continue to grow everywhere, even when you are not dealing with surgeries. It is a painful and exhausting condition.


Every time I’m knocked down I get back up and find a way to keep going. 
THAT IS WHAT I DO – I DON’T GIVE UP


I am begging , crying out for some help i wish i didn't have to but i can't keep going with out it , with everything going on I stay positive but the car has been my only way out of this hell , it gave me some life some freedom some hope, and not with that all under threat I just don't no where to turn please please help if you can........


It is a miracle that I can move at all 5 years ago I was paralysed  from the neck down and I made my way back from that.


I’m only 35 years old. I wish I didn’t need the amount of help that I do. I would prefer to be able to feed myself and wipe my own bottom!! And all of the things that everyone takes for granted.


I had to set aside my pride, because I need help to keep going.
I STILL WANT TO LIVE!!


I am concerned about my dad’s health. It is not easy looking after me. I don’t want him to have another heart attack. I couldn’t cope without him.


I really hope you can see my situation a bit more clearly now.


I REALLY NEED MORE HELP THAN I HAD!