an invisible disease

hello all,

Sorry  I haven't posted in ages, been really busy with exams and travelling and now i have my own laptop so I can post a lot more often.Anyway a  quick update 2018 now I will be 16 in July I can't actually believe it!!! In  May and June I will be doing my IGCSE-s in September I will  begin IB.

2017 was a busy year I was very lucky I had two school trips to Lisbon in Portugal and Berlin in Germany I was also lucky enough to go to Abruzzo for a night with school. I got to go to Perugia and l'isola d'elba. I went back to Leicester and as a christmas present I went to London.

Any way this post is about the fact that  stargardts  is an invisible disease. For example when you look at someone with SD (stargardts  disease) you dont realise straight away that they have it.

now I have never actually said before that it is a disability not in front of many people until this week.

I had an experience which i would rather keep to myself where I had to stand up for myself and say I I have a disability but  i still dont see it as a disability just a small struggle, but to others it is its a disability and others dont  understand it so i need to explain it simply.

I have finally accepted this that I do need to shout out alotmore, and I had a presentation well a 60 second speech about someone who inspires me.

So I decided to choose someone different not Nelson Mandela or Obama I chose Libby Clegg who is a paralympian sprinter with SD. I am friends wth her on facebook . I did my 60 second presentation on her and it got people really curious and its actually built up my confidence alot more with talking to people about my eyesight. I 've always been afraid of talking to people about my eyes and only  certain people like the SEN support team at school and family and close friends.

Now i am talking to most people about it and I feel quite confident.

I 've always had terrible nerves hopefully now is a start to them finally being okay.

thanks for reading

Sorry about typos 

Flo

sorry

hey everyone,
sorry i have been so busy since my last post. it was ages ago i sat down and wrote something i have been meaning to for quite a while now and finally i have sat down andopened up the laptop.
i passedf mty italian GCSE YAY!!! abd i have been studu
ying very hard for all the others i have to do in june 2018.
a lot has happened in the last 8 months.
one of the big things for those with Star gardts would have to be Libby Clegg.
Libby Clegg has Star Gardts the same as me and manu more across the world. she won 100m gold in the para olympics- since then Star gardts seems to be recognised everywhere. i saw a clip of two guys who had star gardts on the Ellen show.
some exciting news for me is a PE teacher at school has contacts with Libby Clegg and has out us in contact.
so yeah.
i promise to keep writing as often as i can and i am sure I wonìt take an 8 month break.  At the moment I am getting boat loads of homework and coursework.
Hope you all had a great christmas and a great start to the new year.

thanks for reading.
:) Flo

BIG STUFF

So, some of you may not know that I was born in Leicester.I lived there for 4 years then moved here to Rome in Italy. And now, Leicester have an amazing story. It all started with a football team that never did very well but always had loyal supporters behind them. Until Claudio Ranieri became manager. We started winning games and getting some attention. Earlier this week on Monday night Chelsea played Spurs. They drew which meant that Leicester win the premier league. I was in bed because school was the next day and at around eleven my dad comes into my room screaming WE WON WE WON.  Me,my mum and my dad all sat around the TV watching leicester party. It was incredible.

On Tuesday morning I went into school with 2 Leicester city tops in my hand and a hat saying LCFC. Everyone congratulated me everyone was talking about my home town. I went into the lunch room and saw a sign sayin LEICESTER CITY FC CHAMPIONS it was incredible. I will always remember this one boy in my class  turning round to me after our teacher told everyone I was born in Leicester and he said YOUR FROM LEICESTER  I answered laughing yes.

It was an incredible moment.

Then last night we had a party for Leicester it was great loads of people came over and watched Leicester lift up the trophy  everyone brought something to do with Leicester I had a great time. 

This week everyone has been so nice to me and we'll I have just been so happy and I am honestly EXHAUSTED from this weeks HUGE party.

In other news on the 16th of May I am going on another school trip for 5 days in The Alps, we are going on a train then a bus. We are all going mountain biking, white water rafting  and we are also going to a water park. We will be returning on the 20th and then on the 21st my family and I will be going to Leicester for three days for a very important wedding. And we will come back to Rome on Monday the 23rd. After that we will only have 4 weeks and 2 days of school until the summer holidays. YAY.

I will try to take photos of this week for you. 

As usual comment any questions you have  that I can answer in next weeks blog.

OH and I almost forgot I know it's very late but, it's my 3rd blog anniversary. And it's all thanks to you all you loyal readers.
Thank you so much.

Remember to comment!!

From Flo
xoxoxo 

I have a lot to say

Sorry, I have been so busy recentlyI haven't  had time to write on the blog.
I have a lot to say.
 First of all I have joined a support group for young people with star gardts . It's mostly just young people in the US. I have made some friends and it's interesting to know how they feel about it and things.

A few weeks ago we had our GCSE choices, we learnt about what we'd be studying. It's very interesting. I chose music, art, history and Italian AS. (AS because I'm doing GCSE this year) I chose the ones I find enjoyable, easy and that I am good at.

It's now the Easter holidays and we have a lot coming up. We have may week when my class and I go to the alps. Then we are going to England for a wedding straight after May week but it'll be very fun, we have no half terms, so this is our last holiday of the scholastic year😭😭

Christmas and 2016

Hello,
For Christmas I got many things I got a tv ,so I can plug in my laptop and have a big screen, I got 3 records 2 Beatles ones and 1 beach boys one. I got 2 cds 1 by the coral a band I just started to like today infact and Adele's new cd. I have been listening to a lot of Beatles recently  playing their songs on my guitar I learnt how to play the lead guitar in I feel fine, Day Tripper and Ticket to ride I have constantly been practicing and I have also been playing their songs on the piano and I am reading The Beatles Tune In (I think that's what it's called) which is about their lives how they met and how they got famous.
I got lots of other stuff for Christmas but I won't bore you with all of it.
For my new years resolutions I have decided mine are going to be pass my Italian GCSE and concentrate on my music, which is hard because I play 4 instruments and I sing. I was thinking the other day how people say if I had your problem I'd go mad and a thought popped in my head that the only thing that keeps me sane is playing and listening to music. I always listen to it on my phone when i am out ion my record player in my room. but I don't usually listen to modern stuff I listen to very few modern pop musicians I listen to very old stuff.

anyway have a great year to all my loyal readers please comment questions , share my blog to your friends and family members and follow the blog

luv ya :)

Christmas is nearly here

Hello again,
My loyal readers from all round the world I was just reading my stats like what countries read my blog and how many I looked at this month and at the top there were 144 people from russia I mean i probably only know about 5 people from Russia. Anyway I would just like to thank you all for being there for me, whenever I look at stats and see how many people read this it makes me forget about the people who aren't nice to me.
For christmas  my family and I are just gonna stay at home and you know have a.nice family christmas at home. We never go away for christmas we always stay here.
Anyway I think you may have guessed we are finally on our christmas holiday we finished on Thursday.
Please comment any questions for me and I would love to hear what you and your families will be doing for christmas even if you don't celebrate this time of year what will you be doing this month. Thank you again and hope you all have a very happy christmas and a merry nw year. Thanks for your support. Oh and don't forget to follow my blog🎅🎅🎅🎄🎄🎄🎁🎁🎁🎋🎋🎋🎉🎉🎉🎊🎊🎊🎈🎈🎈💛💛💙💙💜💜💚💚💚💚❤️❤️❤️💗💗💗💓💓💓💂👼👼👼👼😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄😄
See you next time.

The inspirational people in my life at the moment

At the moment I am finding a lot of inspirational people.
So I thought I might tell you about these people.
My Great Aunt just conqured cancer I am so proud of her and she was really posotive when we went to see her during the summer holidays. She has inspired me to stay optomistic and strong no matter what happens.

At the moment I have been  listening to a lot of Beatles, I have also been reading  a book about their lives before they became famous and it's made me beleive I can do anything with my life as long as i want it enough.
I found some inspirational quotes from their songs, here you go.
Take these broken wings and learn to fly - blackbird
Life is what happens when you're busy making other plans - beautiful boy John Lennon
Life is very short and there's no time for fussing and fighting my friend - we can work it out
And many more.

Please comment ask me any questions and share this blog with your friends and family.
Thank you for reading see you next time bye!!!

Officially 13

I turned 13 on the 29th of july and I am going into year 9 next year. We have to take our Italian GCSE next year I hope they make it easy for me for my eyes. I have had some difficulties this summer like reading text messages . I have an i phone 4S and the texts cant really zoom  bigger so what I have to do is screen shot the message then go to camera enlarge the photo read it and then  delete the photo and go and reply. Its easy when u get used to it its just hard when I am in a group chat and I screen shot it  and while i'm doing all of the above I keep getting other messages on the group so I just give up on the convo. Its easier talking to one to four people, but then I like my little private messages with people no one can interupt.

Well thats it for now bye

Thx for everything
oh and don't forget to follow my blog :)

trips

hello,
sorry I haven't written in a while I couldn't get on to the blog.
a lot has happened since I last wrote on here I went on a school trip to Sardinia in May.

Sardinia

on Sunday 17th of May I went to school to meet up with my class and teachers. we caught a bus to the coast where we caught a ferry and slept there for the night.. the ferry wasn't that hard to cope with I didn't find it difficult at all , but me and my friends did have a great time we went outside and watched Italy slowly  fade away and in the morning we watched Sardinia slowly appear.

we then got off at about half six in the morning caught a bus to the camp and had breakfast and went into our rooms.

Me and my friend have both got the worst eyes in the class and our room was small for 6 people so we slept on the sofa because if we got up in the night we wouldn't bash into a door, the others slept in small rooms. but I can't complain about the room at least it was somewhere to sleep.

next we had sailing theory we learnt all the knots someone always helped me with the knots
later we went to the boats and were assigned a boat and a group for each day then we sailed. then we came back to the camp had some free time and went to the shop the beach. then we had dinner had more free time but at 11 we all played games then went to bed.
everyday was more or less the same apart from Thursday.
it was too windy to sail so we played lots of games.
Friday was our last day we went for a last sail came back to pack and left on a bus to the airport took a plane to Rome and before we knew it we were there.
here are some photos

the teachers said I was a natural at driving the boat, because I didn't use my vision I used my other senses to tell the wind direction.
it was a very fun trip.

thanks again to everyone.

HAPPY ANIVERSARY FOR ABOUT 2 WEEKS AGO

Here is the photo I promissed. i'm sorry I did'nt post itt sooner you know holidays you are always really busy.

YAY officially 2 years what an acheivment.

Anyway this morning my mum was telling me that Disney have started this thing where they take partially blind or  blind and let them  go into Disney land Florida I think for free I won't go . The plane tickets would be too expensive, but Disney have started to look around and see the blind and struggling kids and I am looking forward for any privileges that may come towards my reach.

5000 views !

What a great way to celebrate the coming anniversary by getting 5000 views over 2 years! A lot, right? To be exact, rounded up, it is 5030 so, wow! You think by Sunday we can get to 5100?

I am still going to do my little cupcake.

This was left on my blog last night ....

As a parent, Im not even sure I would want to tell my child if they have it or not. Its this video that made me wonder:http://www.ted.com/talks/caroline_casey_looking_past_limits?language=en
She is very inspirational and a lot of her dedication and motivation came from her parents encouragement and conviction that she is capable of achieving anything she really wants.

What do you think Flo?

So here it is a link to the video.

Caroline Casey video

Watch it before you read THIS...

I think that it was wrong and right that her parents told her when she was 17

right=it showed her that she just has to beleive that she can see.

wrong= I mean she didn't know until she was 17 imagine if your parents just came up to you now and said "oh yeah you are blind" she missed support of her parents and  things to make her life easier.

like a few months ago I learned how to make pancakes on my own by...

1:measuring the flour just knowin where the hand stops

2:well the eggs are easy

3:milk 500 ml is one full special doggy mug

and the frying part I can do that as long as there is a good set of eyes around to help incase something goes out of hand.

Another helpful thing is in the shower i have big dispenser bottles, one with a pump is the shampoo , one without is conditioner ..now I have super silky hair with no embarrassing mistakes.

I wish I could learn how to paint my nails and do my make up without having to ask whether it looks okay.

this is the viewing audience of all time. THANK YOU!!!!!!!!

United Kingdom	2129
Italy	1200
United States	601
France	257
Australia	86
Germany	72
Canada	63
Russia	57
Philippines	44
Turkey	41

Well I guess thats  it for today see ya on Sunday with my picture CiaoXXX

an exciting event and helping others

4 years I have had star gardts, and now two of those years I have had support and encouragement from everyone who as ever read the title locking through my eyes I have enjoyed writing on this blog and I have kept up with it over the last 2 years. I think I should celebrate so we are going to make a little cupcake and have a little celebration next Sunday I am going to post a picture of me and my cupcake celebrating.

My Mum on Facebook is on a group of parents who have kids with star gardts and people who have it too.. she says I don't seem to suffer from it as much as some people I think because it doesn't get to my head I was 8 when I found out and I think that helped me a lot. My Mum also found these 2 12 year old girls and there parents just found out they have star gardts. One of their Mums asked me "would you rather be told you have star gardts before or after your birthday." I thought about it a lot and decided after because you wouldn't want it to ruin your birthday you knowing you are parcially sighted.
Please comment if you agree or disagree with my answer to this women and as usual ask questions don't be shy anything that you are wondering about like ho I do something if yoyu want a more thorough explanation of star gardts or something I've written just comment below. thanks a lot
see ya next time bye xx

SORRY HAVEN'T WRITTEN IN WHILE

 HAPPY NEW YEAR FOR AGES AGO. 2015

We have all been talking about GCSE's so we are going to make my condition official (I think it's all so complicated)

2014 has been a fun year year 7 and year8 alot can happen in a year ,but i need to catch you all up on the juicy bits of stuff. LOL
I have started to get a bit embarrassed when my teachers hand out my sheet and make a big commotion about it like waving my sheet about shouting " Florence here is your sheet enlarged ESPECIALLY for you ." and I sink down into my seat, some teachers just don't get it.
But then there are those really nice people in my class like once the teacher said "now go into your reading book page 129" (my kindle doesn't have page numbers) and they say "Chapter 15 Flo" and this is a person I don't speak to at all , yes they are in my class I don't talk to them though.
Also those people who actually are interested in my eyesight and ask questions.
Those who don't look at me differently they just treat me like a normal person, which I am ,but you know, they are nice people.

well half term is on valentines day. FREE FROM SCHOOL AT LAST!!!!!!!!!!!!!!!!!!!!!!!
YAY

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.