Horriblr Horrible news
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Topic: Horriblr Horrible news
Posted By: nuttymama
Subject: Horriblr Horrible news
Date Posted: 31 October 2006 at 1:42pm
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Our son Micheal has always had eye problems the main one being nystagmus, but he has always coped really well.
I have just found out today that he has been diagnosed with Cone Rod Dystrophy an untreatable condition that will cause him to lose his night vision around 20 and go completely blind by his early 50's 
I don't know what to do, I can't stop crying thinking about this wonderful happy go lucky boy who is going to completely lose his vision
Worst of all the hospital never told me 2 months ago at our appointment it was his visual resource teacher who told me, as she got a fax today. Man life SUX. ------------- Abigail 06/01/2005 Jayden 21/11/2001 Micheal 03/04/1997 |
Replies:
Posted By: Guests
Date Posted: 31 October 2006 at 1:44pm
Im so sorry to hear!!  Im sure he will still grow up to be an awesome little man!!! Big hugs to you all!!
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Posted By: Maya
Date Posted: 31 October 2006 at 1:44pm
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Vick that's awful! Sending you and Micheal some big hugs! -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Posted By: Carmel
Date Posted: 31 October 2006 at 1:46pm
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Thats such sad news I dont know what to say, sending big hugs your way
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Posted By: lizzle
Date Posted: 31 October 2006 at 1:53pm
| Thats terrible. so sorry to hear that Vick. I know from your description, that Michael is a wonderful young man, whom I'm sure will grow into a strong and confident adult despite this disability. Hugs to you and your family. |
Posted By: my2angels
Date Posted: 31 October 2006 at 2:37pm
| oh no, poor we man but he will still get to see things for a very long time and will gain that knowledge unlike children born blind. I bet he will be the type who will live life to the max and experience everything he can while he is still able to see it clearly and make memories. If he doesnt lose his sit till he is 50 then he will still get to see his children grow up and probably even see his grandchildren. It wont be easy but how he deals with it will depend on how you raise him to be and Im sure he will be a confident young man even with this disability. Stay stong and big hugs |
Posted By: nikkitheknitter
Date Posted: 31 October 2006 at 2:47pm
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I'm sorry to hear the news but Vick, you are doing a wonderful job raising all your children and have given Michael a great grounding in life, something that will help him get through life with sight or no sight.
I have no doubt that with your love and support Michael will continue to be the happiest kid out! 
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Posted By: busymum
Date Posted: 31 October 2006 at 2:52pm
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That sounds like really tough news. I guess the good thing (and maybe the hardest thing) is that you have so much notice and can start to prepare him, not just emotionally but also with things like teaching him to read braille or something. Then his life won't stop at 50 if you know what I mean. ------------- |
Posted By: EllenMumof2
Date Posted: 31 October 2006 at 3:06pm
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[/url]Posted By: Roxy
Date Posted: 31 October 2006 at 3:20pm
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Im so sorry for you all.it would be very heartbreaking news.but the one thing I can say is technology is improving so fast all the time...I bet there will be somthing to fix or help at some stage.I hope so anyway!!!!wish I could give you a big huge hug!!!!!! ------------- Caleb 15/11/02 Brooke 14/11/05 |
Posted By: nuttymama
Date Posted: 31 October 2006 at 3:28pm
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Thanks for the support, we are still really trying to digest the news. He is such a wonderful kid and because of his existing eye problems has a fantastic outlook on life already. So I think you are right and he will make the most of what he's got. We are lucky that this is what it is and isn't life threatning, we have to keep thinking it could have been worse
I rang the hospital this afternoon and gave them an earful, but I have so many questions and his specialist is away for a week so they will have to wait. ------------- Abigail 06/01/2005 Jayden 21/11/2001 Micheal 03/04/1997 |
Posted By: jack_&_charli
Date Posted: 31 October 2006 at 3:32pm
i was thinking the same roxy. who know's what they will be able to do within the next 50yrs. i'm sorry you've had such sad news
big hugs to you all ------------- http://www.alternatickers.com"> 
http://lilypie.com"> 
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Posted By: aimeejoy
Date Posted: 31 October 2006 at 4:16pm
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Sorry to hear that Vick - big hugs to you all... ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: AlyAyde
Date Posted: 01 November 2006 at 8:22am
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im so sorry to hear that. Hopefully technology will come up with something to fix his sight before that time comes. ------------- Jayde 25/12/04 Alyssa 08/04/03 http://Alyayde.bebo.com |
Posted By: caraMel
Date Posted: 01 November 2006 at 9:40am
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Sorry to hear that Vick! ------------- Mel, Mummy to E: 6, B: 4 and: 
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Posted By: Jay_R
Date Posted: 01 November 2006 at 9:42am
| I'm so sorry to hear that Vick. Your attitude is great though, and will help Micheal to cope with this as well. Big, big hugs to you all. |
Posted By: miss
Date Posted: 01 November 2006 at 5:53pm
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Wow, that must be such a shock. Big hugs to you and your family. I really hope that technology comes to the party and sorts things out for his d the future of all those out there with this condition.
-------------  
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Posted By: daikini
Date Posted: 01 November 2006 at 7:15pm
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Wow, what a rough way to find something like that out! You are a wonderful advocate for your children, and I am sure that won't change even if the challange has got a little harder. ------------- Becca, mum of 2 girls & 3 boys |
Posted By: Rachael21
Date Posted: 04 November 2006 at 2:14pm
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Sorry to hear that Vick
My cousin is pretty much blind he can see little bits with crazy glasses things and can see with this thing kind of like a microscope thing. He doesn't have the same thing as your boy. He is in his late 20s now and he is a very good dr. Noone thought he could be a dr with his eyesight but he did it and was at the top of his class. Just letting you know nothing is impossible. |
Posted By: miss
Date Posted: 04 November 2006 at 5:46pm
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And my friend's lawyer is fabulous - and completely blind.
It is great to hear that so many people overcome the trials that life throws at them. -------------
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Posted By: nuttymama
Date Posted: 05 November 2006 at 8:17pm
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Thanks that really perked me up a bit. He loves the xbox and wants to be a game tester which is something I can definately see him doing, that or somethingwith computers. He just sits really really close to the TV. we are feeling much better about the news now that we have had time to digest it a little. He has a lot of time between now and then for them to come up with something new. ------------- Abigail 06/01/2005 Jayden 21/11/2001 Micheal 03/04/1997 |