Ema is one week post-op after three back to back brain surgeries – a shunt revision, a shunt infection, and the placement of a new shunt. As Chara McLaughen, our 2014 Greater Chattanooga Hydrocephalus Association WALK Chair, sat by her daughter’s hospital bedside, she shared their recent experience on her CaringBridge blog as well as through Twitter and Facebook. She tagged Darby Schumacher, a current contestant in the Miss Tennessee Scholarship Pageant, who was part of a group of Miss Tennessee contestants who volunteered at last year’s Chattanooga WALK. She also tweeted the current reigning Miss Tennessee, Shelby Claire Thompson. She did not expect to receive a response. Before she knew it, Darby and Shelby had invited Little Miss Ema to attend the opening night ceremony of the Miss Tennessee Pageant. Ema, with a newly shaved head and her shunt showing prominently under her scalp, running from her brain, behind her ear, and down to her abdomen, draining cerebrospinal fluid to relieve pressure and prohibit brain swelling, would not pass up this opportunity. So her mother and grandmother loaded up the car and headed down to Jackson, TN, for the festivities.
That afternoon and evening Ema won the hearts of not only the contestants, but the press as well. After the pageant ceremony ended and the audience had gone home, Ema twirled around onstage with Darby and Shelby. Darby handed Shelby one of her sparkling tiaras, and Shelby crowned Ema. Shelby held her in her arms most of the evening. And Ema educated a crowd about hydrocephalus. Ema, 5 years old, has had 9 brain surgeries to treat her hydrocephalus. There is no cure and the only treatment option requires brain surgery…over and over again over the course of a lifetime. There are over one million Americans living with hydrocephalus. While 1 in 500 children is born with hydrocephalus, anyone at any time can acquire hydrocephalus from a brain injury, infection, tumor, or sometimes as part of the aging process, among other causes. The chance that many of the individuals at the pageant had even heard of hydrocephalus is slight. For the most part, it is an invisible condition because the shunt, the prominent treatment option, runs under the hair and skin. People live with the condition quietly, which can mean enduring daily headaches, vision issues, seizures, learning challenges, cognitive and social differences, and mood disorders.
Little Ema, Darby, Shelby, and the Miss Tennessee Scholarship Pageant, part of the Miss America pageant competition, helped bring hydrocephalus into the public eye. As Darby wrote on her Facebook page, “Last night showed me what being Miss Tennessee is all about. It’s about making people feel special and sharing joy and love with children.” Ema is feeling so beautiful, bald head and all and the contestants have exemplified beauty both on the inside and out. The Hydrocephalus Association would like to thank the pageant executives and contestants for helping us raise awareness about this condition. It’s time to find better treatment options and a cure. We invite those of you reading to join us as we WALK, run, talk, advocate, and research ways to end hydrocephalus. Click here to get involved.
Below are the news stories that have aired about Ema’s experience at the pageant.
5-year-old gets opportunity of lifetime at Miss Tennessee pageant, WBBJ 7 Eyewitness News, Jackson, TN
‘They’ve made her feel like a princess’: Child with hydrocephalus attends Miss Tennessee pageant, The Jackson Sun, Jackson, TN
Ooltewah Girl Takes The Stage At Miss TN Pageant, News Channel 9, Chattanooga, TN