Kathleen,
I know nothing about this disease.  I'm wondering if a speech or
occupational therapist with a specialization in infant feeding could
work with an LC to help this child--someone like Marjorie Palmer, Robin
Glass, or Lynn Wolf.  This is such an unusual case, that someone with a
lot of experience might enjoy the challenge and be really able to help
this child.  I would contact all of the above people and see if they
could give any suggestions or would be able to consult.  I'm also
wondering if the NICU from which this child graduated might not have
such a specialist who would be available to help with these feeding
issues.

It also seems that a group like Pilot Parents might be able to send
someone to see them or call them on the phone to help them deal with
their feelings of desperation in wanting this child to be normal.

Please let us know the outcome.
Hoping and praying for the best.
Bonnie Jones, RN, ICCE, IBCLC