Anyone know of any likely resources here? Please reply directly to the mom at
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Thanks--

Katie

Subj:    Hi!  I'm a mom fighting to use donor milk for my very sick baby...
Date:   3/20/99 12:19:06 PM Eastern Standard Time
From:   [log in to unmask] (emtech)
Reply-to:       <A HREF="mailto:[log in to unmask]">[log in to unmask]</A>
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and meeting a ton of resistance from the insurance company.  My daughter
has Krabbe's disease, which is a genetic disorder that demyelinates the
brain.  She is one of the first to receive a cord blood transplant, and
so far the only child with early onset and rapid progression to survive
the procedure.

We are seven months out from transplant, and my milk supply has run very
low.  Julia's brain needs to remyelinate, the main component of myelin
being fats, only one type of which is found in formulas.  We are in the
process of trying to convince the insurance company to pay the
processing fee ($1500/month) for donor milk as opposed to formula.  Can
you direct us to ANY research on breastmilk as it benefits myelin
growth?  Thank you for any help you can give us.

~Wendy

PS, we have a website on Julia's situation at
http://www.krabbes.com/juliasjourney.shtml