moving into year 7 ..

This week I have been to induction week , so what we did is pretended to be senior school for 4 day. With my eyes , I still managed to cope because most teachers knew about my eyes and enlarged work for me . They made sure I could see things , when we had PE today the sun was really really bright and we were playing rounders and i could not see the ball. .My house lost because it was bright . Everyone said this but it made it even more difficult for me .

I read in a magazine that when you have this disease it will improve you in life and something great will happen to you . The girl that wrote this said she has been accepted into university and hoped to make a good start into her life . I always think of this and it makes me feel happy

I am worried about going into year 7 incase I don't have enough time to do all the homework and it is not enlarged . All the responsibilty in year 7 worries me a lot , like packing you pe kit in your bag or you get detention . Packing things in your bag for all the classes you are going to have and knowing where I am going to go because there are so many floors in the school .

I am still awaiting results from the doctor whether Elsie has the same problem as me .

Thanks for all you responses

Flo

thanks yr 6c

thanks 6C  for the great comments. They were fab.

I've got some charities to recomend to help kids with this kind of problem:

FIGHT FOR SIGHT is one in the UK .

Thanks 6W

thanks year 6 for all these great comments

what do I see when I look into the blob?

when I look in blobby I see lots of greenish squiggly lines.

In the dark how do I cope and what do I see?

I cope with a light.
and I see the same as I usually see but it spreads all around, I say to myself NEVER TRUST MY EYES ALWAYS TRUST MY EARS.

THANK YOU 6W FOR YOUR HEART WARMING COMMENTS.

How could you help me at school?

Hello! Back again; I've been to England the past few days and didn't have time to do the blog.

My friends could help by making sure I can see our work. If we're working in partners and we have only got one sheet each we should receive two sheets. If we're looking far away they could tell me what it is that we are looking at. Let others know about this. Don't worry if you have said, "What are you looking at?" because some people don't know...

Thank you, Sophia (in my class) for this question; its very good.

Answers to Miss Russo's Questions

Are there any  times when you really struggle now? 

Yes,  when I am in class and the teacher knows about my eyes, and may have  written  really small then  I struggle a lot to read it.

You can notice when I struggle because I start crying just little tears rolling down my cheek, because I'm straining my eyes. when me and my friends are looking far away I sometimes  feel embarrassed to ask where it is? so I fake that I see it but I don't...

Did you lose vision all at once ?

I can't remember , that month happened so fast I cant tell when I lost it. however instead a blobby smudge it was squigly

What was it like in the very beginning?

It was harder to cope until I learned to train my eyes and I made my own little exercises practicing where to focus. 

I think I  fell over more and it was more stressful because people were less patient . 

I had to take steroids for the summer which made me very very hungry and I put on weight but its all gone now!

How it has changed me ?

I was not sure what my talents were but now i know I am musical and have an ear for the music !

I have become a stronger person and have learnt to be more patient with people because they may not know what is wrong with my eyes. I used to angry with everybody which just upset me and my family . I now can control my anger and talk more.

Thanks for this question please anybody else feel free to ask me . Thanks for looking at my blog did you know over 600 people from all over the world have looked at it ! And this story is TRUE

what to do if you get this problem?

TELL YOUR PARENTS. 

They will probably take you to the optician,  if not  beg them force them.

 Once you have been to the optician then the doctor and you have to go to school order a kindle and tell your teachers about it.

 When your reading a book with your class find out what the book is before you have started reading it and get it on your kindle. 

 Also do you know that when you lose a sense another one improves. This has happened to me. The sense that has improved for me is my hearing. My ear is so good that if I knew a song and it was stuck in my head I would go and sit down at the piano and fiddle around and after 20 minutes I would know the song with out looking and off by heart.

 So you should experiment with your senses ad see which one is the best and use it.

How do I cope?

I cope by looking at the side so if I was looking at someone I wouldn't look at them I would look just above their shoulder. Some people say to me, "WHAT ARE YOU LOOKING AT!" and they turn to see what it is. When I read I look above the lines. I have a kindle which helps me a lot. ALL the teachers in the Junior school know that I have this problem, this helps too. My friends don't seem to bother that I'm different because I'm not. my friends make sure everything is big enough and my teachers enlarge everything that I have to do; if they don't enlarge my homework, I don't do it. Please add comments like ask me questions about my eyes,tell me what would make this blog better, what you think I should do, but keep in mind that I'm only ten.

what do I miss?

I miss seeing things easily This gives you an idea of what I've seen and am seeing now and the past two years. SO what else do I miss? There are certain books I cant read because the text is too small on the paper book and I cant get it on my kindle. I gave up copeira as i could not continue this with my vision. I can't cycle on my own. In fact I need help from my friends and family for a lot of directing. I remember once on bonfire night it was dark and crowded , i can't see faces clearly . I went off independently with my friends and lost my Mum . I spoke to a stranger thinking that was my Mum , oooops! When we are at break time , I go to the playground and find it hard to find my friends because i can't see their faces clearly. Luckily I have great friends ;)

two years later

I'm now 10 years old and in year 6 .My class know that I have this problem hopefully they will read this blog and understand all about it.  Well I am hoping that my eyes will be fixed and better by year 7 or 8. you know what I'm kind of going to miss blobby (thats my name that i've named my blob) we've been through a lot together before I had it I didn't know who I was.

 The reason i'm doing this blog is because i'm going to go through something quite amazing. JEAN REPLACEMENT!

My little sister hopefully will save my eyes , we have to wait 4 months to see if she does not have the same disease , the doctors think it might be Stargardt's disease.

Welcome

Hi,

I am Florence and I live in Rome .

When I was 8 I woke up one morning with a blob in front of both my eyes. Since then  my life has changed.

I thought it would just be temporary until I told my Dad, we went immediatly to the eye doctor.

He was ready to operate on me because he thought my retina had detached !

They put a tap in my arm and flushed lots of colours into me to see what was wrong. I went in abig coffin and had to stay still until they said . They put head phones on me and I was squished, Mummy held my foot all the while ! ( Mummy says this is called an MRI scan)

Then we stayed in hospital for what seemed like a week

 I had lots of horrible tests on my eyes , which included electrobes on my head and watching spots!

Nobody knows why this happened

watch this space and see how i live with it!