Bay
Age 14
University of Kansas Hospital, Pediatrics
Shwachman-Diamond Syndrome
Bailey ("Bay") has been exceptionally small most of his life because of his disease; he goes along with the nickname "little guy" simply to see the smiles it brings to others. He doesn't balk at taking 30+ pills a day as well as giving himself nightly shots. He rarely complains about spending almost an hour a day doing nebulizer breathing treatments. That's who Bay is: a trooper!
At just 2 years of age, Bay was diagnosed with Shwachman-Diamond syndrome, an inherited bone marrow failure disease that causes digestive, skeletal, skin and brain issues as well as the inability to fight infections and a high risk of marrow failure or leukemia. Having endured over 20 hospitalizations, Bay has gotten to know his hospital staff well. His likeable and cooperative temperament makes the nurses “fight” over who gets to take care of him while he’s in the hospital and his doctors love him.
Bay is a happy, well-rounded kid who excels in school, enjoys baseball, theatre and plays violin in his school orchestra and the youth symphony. He also sports a resilient attitude that inspires those around him to fight their own battles with courage and optimism.
Bay dreams of being a creative performer when he grows up. With his drive, determination and a knack for overcoming life’s hurdles, he poised to do anything.
Wednesday, April 25, 2012
Children's Miracle Network Hospitals Champions
Champions is a Children's Miracle Network
Hospitals program that brings attention to the important work being done at its
170 children’s hospitals. It does this by honoring 54 remarkable kids who have
faced severe medical challenges, and helping them tell their stories.
The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the 17 million children treated at Children’s Miracle Network Hospitals every year. The 2012 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.
The Champions travel for a week in September, first to Washington, D.C., where they traditionally meet with their state representatives on Capitol Hill and visit the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. While there, Champions meet Children’s Miracle Network Hospitals corporate partners, hospital representatives and media partners. These groups convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.
The Champions program designates a child in every state who has bravely battled a serious injury or illness. The Champions represent the 17 million children treated at Children’s Miracle Network Hospitals every year. The 2012 Champions have dealt with a wide variety of injuries and illnesses including genetic diseases, organ transplants and traumas, as well as various types of cancer.
The Champions travel for a week in September, first to Washington, D.C., where they traditionally meet with their state representatives on Capitol Hill and visit the White House. They then take a private chartered flight, provided by Delta Air Lines, to Orlando, Fla. While there, Champions meet Children’s Miracle Network Hospitals corporate partners, hospital representatives and media partners. These groups convene to celebrate a year of medical miracles during the Children’s Miracle Network Hospitals Celebration event at Walt Disney World Resort.
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