schwachman-diamond syndrome????

[Guest guest]

I received an email from someone advising me about another

possibility.

It was the Schwmann-Diamond Syndrome...

Has any one heard of this or had first hand experience with it?

I have found some info on it and it is a strong possibility for my

little girl. Right down to the bone part, she has Internal Tibial

Torsion evry badly and we saw a Ped Ortho who said she may or may not

grow out of it not much they can do.

So just curious....

Thanks!!