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Survivor Stories



David, age 3

PRSS1 Mutation

David also has autism 
Diagnosed with Hereditary Chronic Pancreatitis at the age of 17 months old, David "Ijah" is slated to be the youngest child in the the U.S. and possibly the world to undergo a Total Pancreatectomy & Auto Islet Cell Transplant.

From the time he was born David suffered from digestive problems. Physician told his parents he was "colicky, constipated or just had a stomach virus". His pediatrician advised his parents to switch to formula when he refused to nurse at four months old. After trying six different types of formula his parents switched him to raw cow milk just after his first birthday and from their the vomiting and stomach pains became worse.

Within five months of turning one, David had been treated by his local hospital five times, once each month, and the results were always the same; a diagnosis of constipation, dehydration or a flu bug.
 
Finally, in November of 2011 his parent's pleaded with the ER doctor on call to to test his blood for high lipase levels. Because David's older sister was diagnosed with pancreatitis in 2008, his parents had a gut instinct that their new bouncing boy was suffering from the same disease.

Since his diagnosis on that night, David has been hospitalized fifteen times for severe abdominal pain associated with this rare childhood disease. At home, he suffers daily from chronic pain and takes pain medications, an acid suppression drug as well as enzymes to help his body digest what little food he can eat.  In February of this year (2013), surgeons implanted an G-Tube into David's stomach for failure to thrive after he began refusing food due to debilitating pain.


David also has autism and is not able to fully communicate his wants, needs or pains. Because David has a high pain tolerance, it has been a very long struggle with many sleepless nights as he twists and turns, and tries to “get away” from the pain inside.


At this time, David is waiting for transplant approval.


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