"Rare Disease" the diagnosis that no parent ever wants to hear. "This book gives a heartbreaking expose of what life is like for families that have a member with a rare disease," explains Carolyn Paisley-Dew, ISMRD Board Member. "It follows the journey of 13 families who have one or more children with a rare disease called Mucolipidosis, as they wade through the erratic diagnosis process, medical muck-ups, endless pain, a plethora of medical appliances and home modifications, special education, multiple hospitalizations and surgeries, unrelenting stress and the ever-present fear of death. The...
"Rare Disease" the diagnosis that no parent ever wants to hear. "This book gives a heartbreaking expose of what life is like for families that have a ...
