|02-24-2012, 06:22 PM||#1|
Join Date: Feb 2012
Location: montreal quebec
my first post
Hi my name is Connie and i am a mother of 4.
First off i never thought i would be on this site for disney or wishes(its really weird)still can't get over it.
my oldest jordan is 19 then its tommy 14 amanda (wish kid) 12 and ryan 4.
amanda is everything to me my only daughter so happy but everything changed on jordan's birthday last year.she was losing weight she would sleep all the time finally she started getting headaches i went to our local clinic and they said it was her sinuses acting up.they gave meds and we were on our way.
the meds didn't work so we went to childrens hospital they saw a growth in her nose said we had to see a specialist when we saw the specialist they were not sure so they had her take a scan.they saw a growth big as a golf ball in her sinuses they thought it was cancer so they decided to do a biopsy.
the biopsy came back negative for cancer we were relieved but also worried cause the docs had no idea what it was.after ct scans ,blood test etc we found out that amanda had wegeners granolomatosis a very rare vasculitis disease.we were floored they told us it is very rare in children infact even looking on the net is difficult.but throughout all this amanda has been amazing.she went through chemotherapy treatments steroid injections nose surgeries and she always held her head up high.she found out about maw through a friend she found online and she called herself!!when i got home from work she said mom i called make a wish today,i was surprised at how amazing she is for doing that.
we received a call from maw asking for our email so we could print and sign papers so they could get intouch with her doctors.
3 weeks after that we received our first visit with maw volunteers it was amazing they ask her 3 wishes and of course the first one was disney.
and that is how i got here i was looking up info on maw disney wishes.i have been reading posts by truly amazing families and its a true blessing to find out that we are not alone in our struggles.
make a wish said for us to start doing our passports but we do not have a date yet. but i will keep everyone posted
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