Tuesday, March 3, 2015

Rare disease day

It was rare disease day on Feb 28th. Our beloved neurologist talked about our family and the power of persistent parents at the rare disease symposium.  Seeing lila's MRI on the screen brought back a lot of emotions. We are so thankful that we got a diagnosis and my heart just aches for those families who are desperately still seeking theirs.
This little girl of mine is still inspiring others and giving hope. She is amazing

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