IHOP Pancake Day!

Back in February Bay was in the hospital again, but got to enjoy the pancakes and meet some beauty pageant winners (Miss Kansas and Miss St. Louis) to kick off the pancake day celebration!  After getting discharged we enjoyed more pancakes at our local IHOP and invited everyone to go to their IHOP as well.  Look for pancake day next year and invite your friends!

KU Dance Marathon

Bay's first "official" duty as Champion Child was back in February, at KU Dance Marathon, an annual event held by students at the University of Kansas (Go Jayhawks!) to raise money for CMNH!  There were several families there who shared their stories of amazing care via CMN Hospitals and it was great to meet them and make some new friends with something in common.  The students did a great job- never sitting down, as they "took a STAND for those who can't".  They had all kinds of activities for the miracle kids- a special room, tie-dying shirts, snacks, a bouncy house, games and toys donated by Wal-Mart and more.  The kids enjoyed mixing with the students, joining in on their dances, games and activities.  We stayed until the end to see the big unveil and were so proud of the KU students who raised over $60,000!

Bay's Story

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.

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.