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Old 21 Apr 18, 07:44 AM  
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Goldia
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Well done on the diet. I'm back on the wagon too, after Easter! Keep going!
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Old 21 Apr 18, 08:59 AM  
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All sounding great so far, looking forward to reading your updates.
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Old 21 Apr 18, 09:52 AM  
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Fab pre trippie! Will have a look over your previous ones. Iím thinking of doing a split stay so looking forward to seeing how you get on!
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Old 21 Apr 18, 10:25 PM  
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Sounds like a brilliant trip.

How long did it take for a confirmed diagnoses of stargartds for Evie? Itís what my ds has and they suggested then confirmed it as soon as weíd had the blood tests. Our dd isnít showing any signs at the moment and we donít really want to put her through having a blood test so seeing how she goes. Is your other daughter ok? I canít find our original messages that Iíd sent you, maybe last year, or year before? Sounds like she is coping really well. My ds isnít at Braille stage, but he reads in font 36, has a 1:1 at school and various equipment. He has an amazing thing called a prodigi by Humanware. Purchased through this ehcp for school. They do a Braille version which looks amazing.
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Old 22 Apr 18, 08:55 AM  
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Originally Posted by Floridafour View Post
Lovely 😊
Iím so pleased you all have another trip to look forward to. I always enjoy your trip reports, we have 2 daughters so on the same page so to speak. Your girls are beautiful & growing up fast ! 🙂
Thank you. Growing up to fast.

Originally Posted by Goldia View Post
Well done on the diet. I'm back on the wagon too, after Easter! Keep going!
Easter is the he hard part. I meant to start a couple of weeks before but was pointless.

Originally Posted by halloweenbaby2 View Post
All sounding great so far, looking forward to reading your updates.
Thanks for reading

Originally Posted by O adventurez View Post
Fab pre trippie! Will have a look over your previous ones. Iím thinking of doing a split stay so looking forward to seeing how you get on!
Thank you for reading Hope you find it useful.
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Old 22 Apr 18, 08:55 AM  
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Originally Posted by Bertiebear View Post
Sounds like a brilliant trip.

How long did it take for a confirmed diagnoses of stargartds for Evie? Itís what my ds has and they suggested then confirmed it as soon as weíd had the blood tests. Our dd isnít showing any signs at the moment and we donít really want to put her through having a blood test so seeing how she goes. Is your other daughter ok? I canít find our original messages that Iíd sent you, maybe last year, or year before? Sounds like she is coping really well. My ds isnít at Braille stage, but he reads in font 36, has a 1:1 at school and various equipment. He has an amazing thing called a prodigi by Humanware. Purchased through this ehcp for school. They do a Braille version which looks amazing.
Hi ,

Evie was originally diagnosed with cone dystrophy which is a generic term covering lots of eye diseases, we had blood taken nearly 2yrs ago for geneome project but still awaiting results. Our consultant at Great Ormond Street is fantastic and is 99.9% sure it's stargartds from the way it's presented,(which DW Kelly initially thought when she researched when Evie first started losing vision). But he said it's A Typical stargardts ,(as it a so rare, as it's also affected her perphiral vision too, where it's normally just central vision.) To be honest the official diagnoses isn't worth much to us. Evie lost her vision and thats that really, no matter what they call it .

Kids are amazing and adapt and cope amazingly well, it's a learning curve for parents and family though . But as a family we laugh and joke as our way of lightening it up and keeping it normal for her and our other daughter .

The hardest part was taking her out of her much loved school in yr 5 and moving her to a main stream school with trained TA, she felt ripped from her friends etc, but after only a term in she loves it and now she getting ready to do her sats(predicted above National Average all over) and go to secondary a much more confident and independent young lady. She had to learn Braille as couldn't access print at all anymore and with 6months had over achieved, in learning up to grade 2 and is now just a Braille user. It's just what it is and now is the norm for us.

Please feel free to ask any other questions.
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Edited at 08:57 AM.
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Old 22 Apr 18, 09:55 AM  
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Kat22
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I love your trip reports, they really make me laugh!
We are also going again in may 2019. Have a good deal with virgin holidays as well. Your trip title ressonated with me, my goodness itís eye wateringly expensive! My non-Disney friends think I am crazy! We wanted to go to WL for 9 nights followed by HRH (club level- had to be done!) for 7 nights. 15-31st may. As WL not yet released weíll book AKL and hopefully swap. Got a quote yesterday but have had a restless night worrying about taking the kids out of school for 8 days. I also have another quote for exactly the same leaving on the 17th, so they will only have 6 days off. My kids have 100% attendance and are bright, conscientious little things but it doesnít sit well with me.
Itís the only time we will take them out but still stressing!

Iím so glad to hear your daughter is loving her new school.

Edited at 09:58 AM.
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Old 22 Apr 18, 10:08 AM  
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Originally Posted by gjdjud View Post
Hi ,

Evie was originally diagnosed with cone dystrophy which is a generic term covering lots of eye diseases, we had blood taken nearly 2yrs ago for geneome project but still awaiting results. Our consultant at Great Ormond Street is fantastic and is 99.9% sure it's stargartds from the way it's presented,(which DW Kelly initially thought when she researched when Evie first started losing vision). But he said it's A Typical stargardts ,(as it a so rare, as it's also affected her perphiral vision too, where it's normally just central vision.) To be honest the official diagnoses isn't worth much to us. Evie lost her vision and thats that really, no matter what they call it .

Kids are amazing and adapt and cope amazingly well, it's a learning curve for parents and family though . But as a family we laugh and joke as our way of lightening it up and keeping it normal for her and our other daughter .

The hardest part was taking her out of her much loved school in yr 5 and moving her to a main stream school with trained TA, she felt ripped from her friends etc, but after only a term in she loves it and now she getting ready to do her sats(predicted above National Average all over) and go to secondary a much more confident and independent young lady. She had to learn Braille as couldn't access print at all anymore and with 6months had over achieved, in learning up to grade 2 and is now just a Braille user. It's just what it is and now is the norm for us.

Please feel free to ask any other questions.
Sounds like sheís excelling in school which is brilliant. My ds is going into year 6 September and Iíve now got the task of finding the best senior school. Great Ormond Street is a brilliant hopsital. He had his initial tests there and now he goes to a Moorfields. Heís stable at the moment but never know wether itís going to deteriorate more. Looking forward to reading your report.
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Old 22 Apr 18, 04:14 PM  
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Originally Posted by Kat22 View Post
I love your trip reports, they really make me laugh!
We are also going again in may 2019. Have a good deal with virgin holidays as well. Your trip title ressonated with me, my goodness itís eye wateringly expensive! My non-Disney friends think I am crazy! We wanted to go to WL for 9 nights followed by HRH (club level- had to be done!) for 7 nights. 15-31st may. As WL not yet released weíll book AKL and hopefully swap. Got a quote yesterday but have had a restless night worrying about taking the kids out of school for 8 days. I also have another quote for exactly the same leaving on the 17th, so they will only have 6 days off. My kids have 100% attendance and are bright, conscientious little things but it doesnít sit well with me.
Itís the only time we will take them out but still stressing!

Iím so glad to hear your daughter is loving her new school.
Thanks for reading. Always nice to hear from people going at the same time
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Old 22 Apr 18, 04:15 PM  
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Originally Posted by Bertiebear View Post
Sounds like sheís excelling in school which is brilliant. My ds is going into year 6 September and Iíve now got the task of finding the best senior school. Great Ormond Street is a brilliant hopsital. He had his initial tests there and now he goes to a Moorfields. Heís stable at the moment but never know wether itís going to deteriorate more. Looking forward to reading your report.
You just never know when it could get worse thats why we make these trips.
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Edited at 05:25 PM.
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