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Posted by gl.black@vanderbilt.edu on Friday, September 30, 2011 in Families.

When Nichole and Craig Huseby adopted Joseph, they were thrilled! He was just ten weeks old and arrived on the birthday of their first child, Lily. Both children are adopted from Colombia in South America.

Shortly after returning to the United States, Nichole noticed that her son’s cheeks seemed to have a discoloration or skin condition. She and her pediatrician both assumed that Joseph was just adjusting to the cold Nashville weather. However, the discoloration of Joseph’s cheeks did not go away and eventually, he began to look like someone had smeared chocolate pudding all over his cheeks.

Upon seeing Joseph at Monroe Carell Jr. Children’s Hospital at Vanderbilt, Dr. Smith made a diagnosis that he had never before made in his career due to its extreme rarity; he diagnosed Joseph with Chediak-Higashi Syndrome. According to the Chediak Higashi Association, there are fewer than twenty children currently living with the disease in the United States. Chediak-Higashi Syndrome is when a child is born with no immune system and therefore has absolutely no ability to fight off the most common cold, much less any sort of viral infection. It is extremely rare, with less than twenty documented cases in the United States. Unfortunately for Joseph and his family, it was also terminal. Without a Bone Marrow Transplant, children born with Chediak-Higashi Syndrome die well before the age of ten, most by age three.

Dr. Smith introduced Nichole and Craig to Dr. Frangoul, the only pediatric transplant surgeon at Children’s Hospital. Dr. Frangoul was determined to help Nichole and Craig find a match for Joseph, even though doctors at the National Institute of Health were sure that a match would never be found considering Joseph’s background.

After reviewing over five million potential candidates, including Joseph’s birth mother and two siblings in South America, Nichole and Craig began to fear for the worst. Then suddenly, a close match was found. The bone marrow transplant was completed on October 6, 2004. Today, Joseph is an outgoing, loving, healthy five-year-old. He was selected to represent Tennessee in the 2007 Children’s Miracle Network (CMN) Champions Across America program! His parents and sister are grateful for every day, and they continue to pray for a long, healthy life for their miracle boy, Joseph.

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