Big head, but bigger potential

We saw a professor in genetics last week to see if she could help identify any syndromes at play with our darling Emily Bean.  Once again, Emily has the medical community confused.  The professor has never (in her many years) seen a baby with a cleft palate and an enlarged corpus callusum (white area between lobes of brain that facilitates communication between the lobes). Emily Bean is (as I have always said) a medical marvel.
The Prof reported back, and had the following to say:
"I have been going through literature and found an article that stated that about 6 other children in the world have something similar to Emily with some having the same big head and all having the enlarged corpus callosum and some having the same problem with brain development with 1 person having a cleft palate. All had very poor motor development and some poor growth.

One of the cases had a full workup with the tests we talked about and everything else was negative. So we do not know what causes the condition and whether this is heritable or not. No previous case had an affected sibling up to now.

In summary- we have a sort of name for it—Megencephaly, mega corpus callosum and poor motor development. Therefore it means: no fault of yours caused this, but we do not know the possibility for repeat."

So, plan going forward is to keep on with her physio, add an Occupational Therapist to it, both are NDT (neuro-developmental trained).  They use her exercises to help retrain her neural pathways.  And whatever happens from there, was clearly meant to be!

Nothing will ever change what Emily is, the best thing in our lives!