I wanted to contribute the number of NORD, the National Organizations of
Rare Disorders. They are a parent clearing house of all rare diseases.
They can help this mother reach other parents in the same situations.
The National Organization for Rare Disorders
PO Box 8923
New Fairfield, CT 06812
203-746-6518
1-800-999-NORD
Hopefully they can help.
Anne Andis