KAREN DIAZ
DEAR CALEB'S MOMMY, I LOST TWO CHILDREN TO THIS DISEASE AND GAINED MOST OF MY INFORMATION FROM A PATHOLOGIST NAMED ALEX KNISELY. HE WAS VERY HELPFUL AND KIND. UNFORTUNATELY THE RARITY OF THE DISEASE MAKES IT DIFFICULT TO GATHER INFORMATION AND THE SEVERITY OF THE DISEASE CAUSES THE KNOWN INFORMATION TO COME MAINLY FROM AUTOPSY REPORTS. I WISH YOU A HEALTHY CHILD. GABRIELLA AND DANIELLE'S MOM