News,tests and questions

Hey Florence! How are you? I am an IB student and I have recently been learning about the medical problem that you have. So, I had some questions for you :P I was wondering, how have you accommodated to this eyesight problem in terms of you hobbies? For example, my eyesight is quite weak, so I have to make sure that I don't watch too much TV. So, how have you learnt to change your hobbies?


I got this by email. I did have to stop many things when I got this disease. I can't go out riding on my bike on my own, because I could fall.. I don't have very weak eyes but they are sensitive to light, so in P.E. I have to wear sunglasses but my class don't stare they just get along with it, which I like.
I don't watch a lot of television sometimes I get frustrated because I cant watch a subtitled film .

I still play my music happily , I just need to learn the songs without reading music .
When listening to music I play vinyl more than CDs because it is in larger print on the cover.
I like to read but I am not as bigger reader as I was because I prefer to read a book rather than my kindle .

On Wednesday we went to the hospital after over a year of waiting we have had the confirmation that my genes are definitely Stargardts and my sister was also confirmed to have the disease although her eyes are at the moment ok . She is 9 , I was 8 years and 11 months when I developed the eye disease . The doctor said we still have no cure , they are still testing on animals so he cant give me anything until he is totally sure of the cure .

If my sister  develops  the eye disorder I can help  her as I know exactly what to do and how to cope.

My doctor suggested putting me on an experimental programme I will need to take saffron  . Saffron is very expensive .

so after many tests, tears and pain we found out I have a mutant gene called ABCA4.

for the IB students I hopefully will be on this trial or something like it
http://clinicaltrials.gov/ct2/show/NCT01278277?term=saffron&rank=2


Thank you see you soon. Have faith and stay positive xxx

HARLEY STAPLES

You may have heard Harley Staples from the Harley Staples Cancer Trust.
But me and Harley were friends a long time ago when we were both toddlers we used to go round each others houses and play.
Well this post is dedicated to his family.
This is his story...

Harley was diagnosed with a rare leukemia, om January 28th 2009. Harley was so brave and strong during his illness. He had so many tests and treatments to make him better and he faced everyday as a brave warrior. Harley made friends in hospital he always put a smile on their face even though he was going through rough times, he still smiled.





Sadly he died  on the first of November 2009. He had fought so hard. I remember speaking to him on skype on his birthday and he was smiling because he had not seen me  for ages and he was happy i was settling in well in Italy.
When I visited England after he passed away i visited his grave  I remember

Instruments

Hi Florence! I think your blog is fantastic! :) How are you finding year 8? I was just wondering is it difficult to play the violin with your eyesight problem? Congratulations on your passed exam by the way! Giovanna James yr 12.

I got another comment, but this was on my Google+ account.
this was from a year 12 student who I know reasonably well.

It is very hard to play the violin with my disability but we found ways to learn. I can remember the song that I'm supposed to play, and I play it experimenting which one sounds right or wrong. with the violin though if you put your finger in the wrong place you make the tune sound totally different this a struggle we are trying to over come.
I learn the piano by ear so I don't read music.
I sing in choir but if I know the song I don't need words to read and sing along to.

Me and my mum are going totake pictures of my daily life photoshop those pictures to make them look like what I see to help you guys understand more about my condition.

Thank you for a question

Hello Florence, I am an IB student. I wanted to know how you feel at school when you interact with new people. Do people usually accept your condition or do they think otherwise?

This was the question from an IB student.
This is my answer....

When I look at a person I have to look to the side of their face to see them . Some people take this the wrong way and think I am looking behind them, or even worse not listening to them!

Only today a new student who does not know about my eyes asked me why I was looking really closely at the paper they said " it looks like you want to go through the paper " . This upset me because I felt they were making fun of me.

In year 7 I really liked my class but when it was PE their were two students who always shouted at me when I did not catch the ball.

When I finally had the courage to tell a new student about my eyes they felt sorry for me , I don't like this because there is nothing they can do and I don't want sympathy. This is my normal life !

Thank you so much for the question , I hope I get more questions in the next few weeks .


   

OMG WHAT A DAY!!!!!!

Wow. What a week!
First of all I started rugby at school. I like rugby because  its a fun and legal way of lashing anger out.
I have a lot of anger to lash out so I am hoping to do it on a saturday too.
I got my results back from my violin grade 3 exam. I PASSED!!!!!
I did bad  on my sight reading I'm  OK with this because lots of people find sight reading a hard part of the exam. Next year I'm going to practice a lot more.

I had my first piano lesson this year I'm going to learn all types of styles of music on piano. I'm learning by ear, not reading music.

Whilst I'm writing this I've got an ice pack on my knee because I was taking a stupid short cut to get to a takeaway pizza place (al taglio) and I didn't see a long dumb wire and I think you can guess. I tripped over it! Oops! But my Dad and his companion (Dan) followed and said they wouldn't of seen it too.

I have a few questions for my beautiful readers :
1: What do you think of this blog?
2: How can I improve it?
3: IB studnts ask any questions you want to be answered?

EXTRA UPDATES: I am going to the hospital on the 12th of November to check I am any worse we are going to take photos of the tests if we are allowed and we will post them.
We are going to also check my sister Elsie to see whether she has got it too.
Good luck doctors!! (She kicks)

Thanks and bye!!

what it looks like?

First of all before I start getting into details, I would like to say please post this on your accounts of whatever your media, and I would like to welcome the IB students from St Georges to this website.
I hope you find your answers on this subject here and if you have any questions to ask don't hesitate either comment below or ask your teacher to send it to my dad.


Now into the details.


The other day year 8 were on their trip to santa savera (the beach) and on our way back one boy on my bus stopped me and started to ask me some questions. I answered them of course but then I wondered whether anyone else wondered that to so I decided to do this.
So this blob I see it sort of looks 3D but isn't it also has little scribbles in it like a child just scribbled but inside the lines, and the weird thing is these scribbles move.
It doesn't have a certain colour it  is like when I look at something white the blob is white. When I look at some thing red it's red etc.


Just wanted to say I am now 12 and I am in year 8.

SUMMER HOLIDAYS

GREAT NEWS!
I'm on holiday:)
I promise I will  write every week.
other great news my 12th birthday is coming up so I am going to write something really special.

please comments

PLEASE COMMENT WITH QUESTIONS YOU WANT ME TO ANSWER.

tests and trends

a few weeks ago I had a whole week of tests every day every lesson.it was SO stressful. the teachers gave me HUGE TEST SHEETS and gave  me an opportunity to have more time for the test but I never needed it so I didn't take it. I got the results back I did OK in most of the tests but science. I am terrible at science but how I don't know  I got third best.

One thing has bugged me this week. loom bands are suddenly the big trend at school so we bought some the other day its very hard for people who can perfectly see imagine me. I have made 5 good bracelets. I want to challenge my self and make a football with my sister of course.

Oh that reminds me football. the world cups on. I can't watch the world cup because its hard to keep track of the ball, and I love playing football I am a good goalie last week we had sports day I played football and when I didn't save a goal my tutor group just said good try Flo  this makes me feel good although I did something bad. So thank you year 7 Minerva!!!!!!!!!!!!!!!!!!!!!!!!!!!1

may week

2 weeks ago year 7 went on a residential trip. we went to the grand Sasso mountain we stayed in a small hostile.
We did lots of walking, hiking e.c.t
the teachers said I was really good and they gave me the student of the week award.

my helpful new phone

I am sorry I haven't written a lot but it's the hols.
any way I got a new phone it is one that has large text and you can take screen shots.
The Samsung galaxy trend plus

 

The only reason I got this phone is  because my old one went in the washing machine.

anyway next week school starts so I'll have a lot more to write about.

;)

my success

look.
loads of different countries are looking through my eyes. this was just this week.


answers for colour blind test:
1.74
2.12
3.5
4.8
5.3
6.29
7.15
this is what my sister can see,
but I see this
1.21
2.12
3.
4.
5.2
6.1
the ones that I left out I have NO idea what they are.


Now I am feeling and getting more and more angry about my eyes. I knocked over a brand new jam jar and it smashed there was jam EVERYWHERE!!!!
Also a few weeks ago I knocked over our family pot that we had painted so beautifully. Our family pot is a pot where we put our things that we are angry about or proud of that happened every week. We smash it open on new years eve and read them all out.


I am glad I have got this blog so then I can tell some body about my difficult life.
Here its just me and my key board but just to think it goes out to millions of people in an instant.