Emily
Age 8
Children's Hospital Boston
Immune Disorder
While Emily has been extremely susceptible to illness and infection throughout her life, she seems entirely unsusceptible to discouragement.
At 6 years old Emily was diagnosed with hypogammagloblinemia, a rare and incurable immune deficiency disorder. She immediately began tri-weekly therapy that will likely continue throughout her life.
The four-hour treatments leave her exhausted and bedridden for a 24 to 36 hour period, but she’s less susceptible to infection for another 21 days. Her family hopes that Emily’s advocacy will lead to additional research and solutions.
Always a source of encouragement, Emily offers words of wisdom to nervous adults donating blood: “Don’t worry. I do this all the time, and it really doesn’t hurt very much at all. The prick only lasts for a second. And just think, your blood could help a kid like me!”
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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