Jon Noon's Bio
Dear Friends and Family,

Our thirteen year old son Jonathan was born with a rare liver disease called Biliary Atresia. Biliary Atresia is a disease that starts at birth and is found in one in twenty thousand babies. The disease causes a deterioration of the bile duct traveling from the liver to the gallbladder, and out through the bowels. The initial symptom of Biliary Atresia is jaundice and usually detected in children raging from 6 to 10 weeks old. By the time the disease was diagnosed in Jonathan it had already destroyed the entire bile duct, gallbladder, and progressed into his liver. Jonathan had an operation known as the Kasai Procedure to temporarily mitigate his liver disease. This procedure constructs a new bile duct, made out of a piece of the child's intestines, connecting the liver back to the bowels, enabling the liver to excrete the bile and relieving the jaundice. The success of this procedure depends on the initial damage to the liver. If the damage is too severe, this procedure may only work for a short time, or, in some cases, not at all resulting in the patient needing a new liver immediately.

The Kasai Procedure was performed on Jonathan when he was ten weeks old. This procedure has allowed Jonathan's liver to function while he waits for a liver transplant. He also takes numerous medications each day to help his liver process nutrition the way it should. However, he will ultimately need to have a liver transplant.

Jonathan has been on the Boston area organ donor list since he was two years old. Jonathan visits doctors from the transplant team at Mass General on a monthly basis to monitor his various liver functions.

At 8 years Jonathan was placed on a donor list in Pittsburgh PA. In order for Jonathan to stay active on this list he must travel to Pittsburgh once a year to be seen in person, while Mass General also sends his records monthly.

Sincerely,

Jeff, Erin, Benjamin & Jonathan Noon

by Hannah Gursky on Fri, Oct 19, 2012 @ 9:17 AM

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