Cal's Cupcakes Blog

Inspiration and Hope 

The Fifth of July

Cal received her official diagnosis of late-infantile onset metachromatic leukodystrophy (LI-MLD) on July 5th, 2012. Pat and I had returned to the hospital to confirm the test results and meet one of the two doctors at CHOP who treated children with leukodystrophy. The young doctor's name was Amy Waldman. To be sure, going back to the hospital struck me as a futile exercise. Cal, who was just 2, was not expected to survive beyond the age of 6. It seemed to me there was nothing to be done but plan for our Make A Wish vacation and "enjoy the time we had left." My rage at the doctors for having no way to save Cal left me betrayed by the promises from all those children's hospital telethons so

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