[tri-med] Re: Karen

----- Original Message ----- 
From: "Kaufman, Faye"
> Karen, have you looked into piggy backing SOFT US for charitable status? =

It still wont get us Australian charitable status. Piggy backing with the US 
would only give people who donate to SOFT Australia, US deductions on their 
tax - which for Aussies doesnt help (we want Aussie tax deductions). And 
piggy backing with the US would mean we need to send donations to the US 
which then automatically stops us getting the Aus donation benefit.

I have managed to get stage one done. SOFT Australia is a registered not for 
profit company. ATO (Australian Tax Office) status is a whole other ball 
game and its not easy to do. Thats not to say that it cant be done, but its 
going to take a concerted effort from more than one individual.

As for what you can do regarding the Atlanta study - I have a volunteer and 
we are discussing it. I cant in all conscience accept donations off people - 
its just a me thing. The only time that I have backed down on that is for 
the domain and the computer.

I had hoped to spend more time on the Atlanta stuff over the weekend but as 
usual Alex likes to throw me a curve ball.

After 5 or 6 years of having a reliable swallow he started choking on 
various foods about a month ago - and I mean choking bad. Then over the 
weekend he started complaining that his neck hurt. My immediate thoughts 
were that he had a sore throat and earache - because of his distorted 
perception of pain its hard to work that sort of thing out sometimes. Bottom 
line is that its not his throat and its not his ear its muscular / soft 
tissue pain. So now the big question is whether its related to the sudden 
loss of swallowing and is it all related to the continuing loss of hearing. 
Add to that the fact that I saw him starkers after his bath this morning and 
noticed just how "different" the left side of his body is to the right. As a 
therapist if I had seen the shoulder difference I would have said he had a 
severe scoliosis - but he doesnt. Is that related as well or is it just the 
mosaicism. How I wish I could get that blinking MRI done - I am still not 
convinced that there isnt something going on up there and I cant get an 
answer as to what they thought they saw on his last CT scan.

So I am just doing the agonising at the moment about whether this is urgent 
and if I need to dig my heels in whilst slapping a few doctors about the 
head - or if its not related at all and I am just being paranoid.

The supreme happiness of life is the conviction that we are loved.
-- Victor Hugo

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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