My Nonprofit Reviews

At the age of two our son Banning began complaining that his stomach was hurting. As new parents we immediately thought his stomach might have been upset and his discomfort would pass by the next day. As the next morning arrived, Banning woke up in severe pain and was curled up into a ball and crying in pain. This concerned us greatly and we raced Banning to his pediatrician to find answers. Leaving the office we were convinced the discomfort would pass and was an isolated incident. The days and months that passed saw Banning’s pain intensify and his discomfort was so great he was refusing to eat and drink. Without proper nutrition he began to lose weight. Working with our pediatrician we made appointment with specialists in the areas of gastroenterology and infectious disease to find answers. While the stomach pain continued Banning began to have fevers which would spike in a matter of minutes to an alarming 104.5. The fevers were unfazed by Tylenol and Ibuprofen and we were unable to reduce his temperature without a visit to the Emergency Room. Banning was also prone to becoming sick with frequent colds, ear infections and even a rare case of giardia (normally found in third world countries). While illness in children is common, Banning was unable to fight off the illnesses quickly and took weeks to recover from a simply cold.

The months that followed were some of the most difficult and stressful my husband and I have ever experienced. Banning was now averaging 4 doctor’s visits and two trips the Emergency Room each month. Still no answers to why he was experiencing these severe episodes of stomach pain and cyclical fevers every twenty one days. His Gastroenterologist performed an exploratory scope of Banning abdomen to determine if there were any abnormalities. The scope raised concerns in Banning’s pancreas and the specialists spoke with us about the possibility that our son may have Cystic Fibrosis or Schwachman Diamond Syndrome, both debilitating diseases which attack the body’s vital organs. Banning was immediately placed on Creon, a drug used in cystic fibrosis patients, to help absorb the nutrients of the food he was eating. As there are no generics available for this drug, the prescription costs exceeded $800.00 for a month supply. This was a financial strain on our family, but the cost was minimal in contrast to our son’s continued health.

The episodes of stomach pain continued, although less frequent in the months that followed. It became apparent that this illness would not be diagnosed without seeking the help of a pediatric specialist outside of Orlando. After many long hours of research we were directed to the University of Florida Shands Children’s Hospital Hematology and Oncology Department.

After a six week period in which Banning’s blood was drawn twice a week, we had collected data which lead to a diagnosis on neutropenia, an abnormal reading of neutrophils (a type of white blood cell whose function is to fight off infections by destroying bacteria). While this was encouraging and seemed to explain the frequent illnesses, it did not explain the frequent stomach pains Banning was continuing to experience. The Hematologist recommended we seek the guidance of the Pediatric Gastroenterologist at Shands.

We were placed under the care of Dr. Christopher Jolley, Chief of Pediatric Gastroenterology, Hepatology and Nutrition. Banning was given an MRI of the abdomen (pancreas) to determine if it was functioning properly with manipulation. Following these results it was determined that, in fact, Banning’s pancreas was not absorbing the nutrients of the food he was consuming and a diagnosis of pancreatic insufficiency was recorded.
We have been given a clinical diagnosis of Shwachman Diamond Syndrome. Immediately I contacted Camp Sunshine because we had heard of the SDS week. There we met families with similar stories to ours. Also, it was great to be able to connect with those families who "understood" our situation. Our family has made forever friends through Camp Sunshine. We cant say enough about Camp Sunshine's positive impact on our lives. We are forever grateful.