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Fragile X Syndrome

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Fragile X Syndrome

Postby electrongirl » Sat Nov 03, 2007 6:25 pm

I know this isn't anything to do with weightloss but I really wanted to share.

As a few of you know, my son has Fragile X syndrome and I am the carrier of the gene.

Its actually the most common genetic mental retardation.

Apparently 1 in 260 women carry it. I didn't realise it was that common.

I had never heard of it until Ashley was diagnosed and thats usually the case for most people.

My husband recently heard about trials being done on drugs that may actually reverse the affects of the syndrome.

To think that my son may be able to do the things he cannot do at the moment astounds me, and terrifies me aswell.

To give you an idea of what Fragile X is like here is a video I found:

http://www.youtube.com/watch?v=-6-J_YcVRi4
Nikki - Aussie girl living in the USA with her soul mate. My blog: http://aus2usa.blogspot.com/

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Postby kate_turner2000 » Sat Nov 03, 2007 7:44 pm

thanks for sharing that nikki, have you known since ashley was born or before he was born that he had it? he seems like an average wonderful boy to me :) will your future children have it?
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Postby electrongirl » Sat Nov 03, 2007 8:19 pm

I didn't know he had it until he was about 2 years old. He walked and talked etc at normal ages but then his speech didn't develop far past mama bubba dadda etc.

So we took him to a pediatrician who tested him and they found the Fragile X. We never knew it was in our family, my mum passed it to me and my older sister (she has a son with it too).

I have a 50% chance of passing it onto my future kids.

Ashley is above average in the severity scale of Fragile X. When I watched that video I actually felt lucky. He is such a good kid and so loving.
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Postby Lush Gal » Sat Nov 03, 2007 8:19 pm

Nikki, I watched the video. I hope that you find an answer.

My heart goes out and is with you. xxs
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Postby yummymummy » Sat Nov 03, 2007 8:48 pm

its amazing how common it is, I wonder if its on the increase like autism, apparently 1 in 130(ish) children deveolp autism in WA at the moment
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Postby electrongirl » Sat Nov 03, 2007 8:52 pm

yummymummy wrote:its amazing how common it is, I wonder if its on the increase like autism, apparently 1 in 130(ish) children deveolp autism in WA at the moment


Far out! You would never think it was that widespread. I had never heard of Fragile X until Ashley was diagnosed, but its been in our family for generations.
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Postby kate_turner2000 » Sat Nov 03, 2007 9:39 pm

i have never heard of it either and ive worked with special needs children.
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Postby Mandie » Sat Nov 03, 2007 11:31 pm

Thanks for sharing that Nikki.. you're lucky it's not so bad, but it's always challenging with special needs children.

Re: autism - it's interesting that it's on the rise - I spoke to a paediatrician about it, she thinks it's a mixture of the condition actually increasing in prevalence and the fact that it is diagnosed more often now... there's a whole lot of different kinds of autism, and so various kids who would have just been "weird" in years gone by are being diagnosed with the disorder.
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Postby Playboy_bunny » Sun Nov 04, 2007 11:35 am

thanks for sharing nikki I had never heard of it until now
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Postby hushpuppy » Mon Nov 05, 2007 10:13 am

Hy Nikki my hat goes off to u mate . I worked with Kids with autism aspergers sydrome and fragile x before i had my kids at Giant Steps for 4 years and know hard it can be . I only had then for 6 hours a day . One thing i will say mate is make sure u have a break at least once a week like a walk be yourself or hot bath to relax in as its hard work
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