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apeced · APECED SYNDROME
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re - apeced   Message List  
Reply | Forward Message #12 of 593 |
Re: re - apeced

Hi karen,
My name is kathy jones and i recieved an email from yourself today,
and i just wanted to say welcome,
i am so sorry to hear about your 3 daughters
my son is 7 years old and he has apeced, we are from belfast
n.ireland and through the internet i have met some lovely people
whom have apeced or whose children have it,
I just came across this site by chance also last week and i think it
is wonderful, Linda is a lovely kind and very thoughtful lady who
has already put me in contact with a childs mum closer to home in
ireland, i am also in contact with a lady in london whom has apeced
but most of all has brillant knowledge and when ever i am worried or
upset etc i can phone her, plus i am in contact with a professor
whom has apeced and is studying it also, so its good to bluid up a
network of friends whom you can turn to for advice.
When my son was first diagnosed i was very afraid and felt very
alone, i didn't know what apeced was and i wish i had this forum,
I was only 20 when he was diagnosed and although i had the support
of my family i need to speak to someone who what i was talking about.
i just wanted to let you know if in any way i can help or give
advice i will, and i will run it pass my new found friends also, you
can email anytime and take care katee5j@...





Mon Oct 30, 2006 11:16 pm

kateee5j
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Forward
Message #12 of 593 |
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hi everyone, came upon this site as I was browsing apeced. I am a mom whose three daughters diagnosed with apeced. All three followed same progression....
karenza_58
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Oct 30, 2006
5:19 pm

Hi Karen and welcome to the site! I started this message board a while ago and only recently feel it is serving a purpose. It sounds as if you have...
lsquittman
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Oct 30, 2006
9:21 pm

... so ... is ... years ... of ... your ... has ... was ... later ... My ... then ... apeced ... these ... the ... the ... has ... this ... this ... Hi Linda, ...
karenza_58
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Oct 30, 2006
10:42 pm

Hi karen, My name is kathy jones and i recieved an email from yourself today, and i just wanted to say welcome, i am so sorry to hear about your 3 daughters my...
kathy
kateee5j
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Oct 30, 2006
11:21 pm

Hi Kathy and Karen, I am glad both of you found this board and the timing couldn't have been better. So many exciting things are finally happening. There is...
lsquittman
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Oct 31, 2006
2:13 am
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