[ Post a Response | 22q Deletion Interest Board ]
Posted by jenny
on 1/5/2009, 2:28 pm, in reply to "Just found out"
121.222.238.4
dear leah
i just read youre post i am sorry for you but thereis help out there.i lost my firstchild when i wa just 21 it is hard to get all into youre mind i have two boys with this syndrome they arenow both at school full time this year.it is scarey at first but later it becomes interesting but if you need some one to talk to about it youare welcome to e mail me any time i also have msn addy too i do hope to here from you soon jen
--Previous Message--
: hi
: my 9 month old daughter has just
: been diagnosed with Q22 deletion,
: and I am just devastated, I have no
: idea hw I am going to deal with
: this, I am just so scared. I am only
: 23 and my whole life I have grown up
: with my sister who has an
: intelectual disability but do not
: know the medical name for what she
: has, and just seeing her, how she
: is, I just don't know how I'm going
: to deal with it if my daughter is te
: same way. My mum refuses to get her
: tested in fear she will have it and
: she does not want to be blamed for
: it, but this will determine weather
: or not my fiance and I have more
: children.
: I'm just so scared, my daughter is
: reaching all her milestones and many
: doctors say they she looks like a
: normal looking baby and you wouldn't
: even know jus by looking at her that
: she has something wrong with her.
: I'm just scared of the unknown, its
: just a big waiting game at the
: moment to see how severe its going
: to be.
: And the thing that pisses me off the
: most is that during my pregnancy
: with her I did everything perfect, I
: exercised ate all the right foods,
: did not have not one bad piece of
: food, not one coffee, not one drop
: of alcohol, I don't take drugs so
: theres no need to mention that, di
: not have one painkiller such as
: panadol or nuraphen. I just did all
: the right things and still shes not
: right. I was stressing so much that
: I did everything right because she
: wasmy 4th pregnancy, I had 3 prior
: misscarriages before her and they
: did all teting to find out wh and
: there was o reason, everything
: looked normal with my cells and
: chromosomes.
: Just don't know what to do from
: here, plus I live in a small mining
: town in the middle of no where so
: theres not much support here and we
: have no family up here so its a bit
: hard. Please someone respond with
: some encouraging words.
: HELP!!!
:
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