Children’s Hospital patient Joseph Huseby is representing Tennessee in the 2007 Children’s Miracle Network Champions Across America program. (photo by Kats Barry)
Tennessee’s ‘Child Champion’ embarks on whirlwind tour
Joseph Huseby is going to Disney World, that magical place considered a rite of passage for youngsters. But this isn't a typical family vacation — it's a trip of a lifetime for Joseph and his family.
Joseph, a three-year-old patient of the Monroe Carell Jr. Children's Hospital at Vanderbilt, was selected to represent Tennessee in the 2007 Children's Miracle Network (CMN) Champions Across America program.
The family and the other child champions for each state left for Washington, D.C., on March 28, and will possibly meet the President during a luncheon at the White House. The families will travel to Disney World in Orlando, Fla. on March 31. They will stay in Orlando until April 5, representing their home state, and taking part in tapings for the national CMN telethon.
Joseph was diagnosed with Chediak Higashi Syndrome when he was just 6 months old. The disorder is an extremely rare and life-threatening genetic disorder that can leave a child with virtually no functional immune system leading to death.
According to the Chediak Higashi Association, there are only a handful of children — probably fewer than 20 — currently living with the disease in the United States. A bone marrow donation saved Joseph's life just one week after he turned 1. His family says Joseph's selection as Child Champion is just another chapter in his miraculous life story.
“It is an honor that our family was chosen, especially Joseph. It's not only what we went through, but how incredibly Joseph went through it, to survive and be so resilient,” said Joseph's mom, Nichole Huseby.
This is the second year a patient from Children's Hospital has been selected to represent the entire state. Last year, leukemia patient Katie Vacanti-Mitchell served as Tennessee's child champion.
“Joseph is so excited about going to Disney World and meeting Mickey Mouse. He has never been there before, and he has been running around the house wearing his Mickey Mouse ears almost every day,” Nichole said.