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 Grace

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momytoamazinggrace
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Number of posts : 4
Age : 38
Registration date : 2008-03-02

PostSubject: Grace   Sun Mar 02, 2008 10:28 am

Hi there,

I'm Mom to Harry 6 and Grace 10 1/2 Months, Grace has a condition called Smith magenis Syndrome,she also has a minor heart abnormality and thankfully it doesn’t cause her any problems.

Smith Magenis Syndrome is a chromosomal disorder which is caused by a micro deletion on chromosome 17. Most children with SMS have developmental delay and moderate to severe learning difficulties. In infancy low muscle tone, feeding difficulties, failure to thrive and frequent ear infections are common. Speech delay tends to be more pronounced than motor delay, and language comprehension is more impaired than expression.

At the moment Grace does seem to be a bit delayed with her development and does have feeding difficulties and weak muscle tone in her trunk area.

Despite all her problems Grace never stops smiling and is loved by everyone that meets her.

we have set up a website for her her please feel free to have a look
www.graceriddell.co.uk

Look forward to speak to you all soon

Emma
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Debbie Lou
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Number of posts : 218
Age : 49
Registration date : 2007-05-20

PostSubject: Big warm welcome to momytoamazinggrace   Sun Mar 02, 2008 10:31 am

Hi there welcome along you are very welcome here please ask if you need anything i will be pleased to help

Deb x
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SJeynes
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Number of posts : 48
Age : 48
Localisation : South Yorkshire
Registration date : 2008-03-27

PostSubject: Re: Grace   Fri Mar 28, 2008 6:02 am

What a lovely website! Such lovely photographs and your diary is such a good idea, I sometimes wish I had done something like this for Lew, but at the same everything moved so fast that it just didnt enter my head and now he's pretty much stable (fingers crossed) so there isnt really anything to report, although we do keep an epilepsy diary.

I did keep a journal from 15th September to 7th November 2006 and when I found it again the other day, it was quite hard to read as that was the time when Lew's condition was the most degenerative. But I believe that in future it could come in useful, as I am sure Grace's diary will as she grows and you can look back at specific time periods and see what changes have happened and how things have developed.
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momytoamazinggrace
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Number of posts : 4
Age : 38
Registration date : 2008-03-02

PostSubject: Re: Grace   Sun Apr 06, 2008 6:49 am

Hi there, thank you for your lovely comments, I just had a peep at Lewis site, Wow! what an amazing little boy you have the site is lovely, you have a lovely family Smile

Speak to you soon

Emma x
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Joanna
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Number of posts : 18
Registration date : 2008-03-05

PostSubject: Re: Grace   Mon Apr 07, 2008 12:39 pm

Nice to meet you your website is lovely and so is your little girl chat soon x
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SJeynes
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Number of posts : 48
Age : 48
Localisation : South Yorkshire
Registration date : 2008-03-27

PostSubject: Re: Grace   Tue Apr 08, 2008 1:16 am

Thanks also Emma for your comment in Lewis' guest book. Its so nice to hear from people who have had a look xx
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*mikaylas_mummy*
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Number of posts : 88
Age : 33
Localisation : Melbourne
Registration date : 2007-12-09

PostSubject: Re: Grace   Tue Apr 08, 2008 10:17 pm

Hello and Welcome
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