My baby tested positive for galactosemia

We have to take my 1 week old to a genetics doc because she came back positive for galactosemia. This means I cannot breast feed her until further notice because she may never be able to have lactose based products. I know there are worse things but this is life changing. Thank god for modern medicine because babies before the 80's died beecause of this. Lactose actually shuts the babies body down since they cannot process it. Does anyone else by chance have any experience with this disorder?