Honored Kid

Logan M

Age 22
Logan M Kid Photo

Location

Bradenton, FL, US

Diagnosis

Shwachman Diamond Syndrome

Date of Diagnosis

November 2001

Status

Pre-leukemic condition

Treated At

Cincinnati Children's Hospital Medical Center

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My Story

Logan, has a condition called Shwachman Diamond Syndrome(SDS). It is a bone marrow failure, pre-leukemic condition affecting 1 in 250,000 children. It is made up of two parts, pancreatic insufficiency and neutropenia. The pancreas doesn't produce enough enzymes to breakdown the child's food to get the nutrition to keep them healthy. The children typically take enzymes to help combat this symptom. The neutropenia keeps the marrow from producing enough neutrophils or white cells to fight infection. Due to this even a cold can be fatal. We are very blessed that Logan's bout with SDS has been atypical. One of the key barometers to measure an SDS patient's health is their Absolute Neutrophil Count or ANC. A healthy individuals ANC ranges from 1700 to 7800. Logan's at his healthiest was around 440. When he was sick it was under 100, which is considered critical. When a child with SDS starts to get sick they must be rushed to the emergency room for IV antibiotics when they have a fever of 100.5 or higher. When we lived in Cincinnati, we were in the ER at least once a month. By the grace of God, we discovered while on vacation, he seemed to be healthier and do better. We had blood work done before leaving for vacation and his ANC was at 440. Seven days in Florida and his ANC was at 1800! The doctors had no explanation but said if you have the ability to relocate, we would encourage it. That was 2004. Now in 2012, seven full years later, we have yet to make that rushed trip to the ER.

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