RAre ieases & The researching Tina

April 11, 2000

There is even a support group on line called

At 02:20 PM 4/11/00 +1000, you wrote:

Hi Tina the 2nd!

" so i went back to the genetics and said can you test her for larsen

syndrome? and she said no cause she doesn't think that what it is. so i

figured why not do it if no one knows what she has. "

To quote Monty Python (my hubby told me this

one)

" You're not qualified! "

" i am gonna take her to every dr possible. "

YES YES

This is what I did, 5 zillion practitioners of all sorts

later, with help from internet research and contacts I have a diagnoses.

We know there is a problem with your little one, now we just have to find

it!

" i wish i knew what was going on.what ever she has it is very rare.

"

I am sooooo dumb.... NORD (National Organisation of Rare

Diseases) are the people to contact! They are absolutely fabulous!

You can find them online at

They are lovely to deal with, and have a network for people

with rare diseases. And they have a search!

Hope they help!

Love Aisha.

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