[gjdjud]

Originally Posted by Bertiebear

Sounds like a brilliant trip.

How long did it take for a confirmed diagnoses of stargartds for Evie? It’s what my ds has and they suggested then confirmed it as soon as we’d had the blood tests. Our dd isn’t showing any signs at the moment and we don’t really want to put her through having a blood test so seeing how she goes. Is your other daughter ok? I can’t find our original messages that I’d sent you, maybe last year, or year before? Sounds like she is coping really well. My ds isn’t 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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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.