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http://www.dailyherald.com/article/20111030/news/710309890/
Humiliation for Vernon Hills teen fuels activism
Article updated: 10/31/2011 6:27 AM
By Burt Constable
At an age when some girls feel they will die of embarrassment if they are caught wearing the wrong shoes to the mall or let a boy get a glimpse of them on a bad hair day, 14-year-old Ally Bain of Vernon Hills was sobbing in agony and about to soil herself in a public store.
“I suddenly had severe abominable pain. I knew I had a matter of minutes to find a restroom or have an accident,” Ally says, remembering that June day in 2004. “I was so desperate for a bathroom, I was bent over and everything. It was the first time I felt my disease had gotten the best of me.”
Diagnosed at 11 with the inflammatory bowel disease Crohn's, Ally was accustomed to her illness sapping her energy, preventing her from eating pizza and popcorn, forcing her to use the bathroom as many as 40 times a day and inflicting sudden urges that interfered with sleepovers and field trips.
One of those urges struck Ally in 2004 while she was shopping at a large chain clothing store that offered no public restrooms. Ally and her mother begged the manager for permission to use the employees' bathroom. He refused. Ally soiled herself.
“I was crying while walking back to the car, and my mom said, ‘Let's work to make sure that this never happens to you or anyone else again,'” Ally remembers.
“It was such a helpless, horrible feeling,” remembers Lisa Bain, Ally's mother. “I felt such intense anger, like I'm sure any parent would. Looking back, that was a pretty bold promise.”
Nonetheless, they realized that goal in August 2005 with the passing of Ally's Law, also known as The Restroom Access Act, which made Illinois the first state to guarantee bathroom rights to people with medical needs. Eleven other states now have similar laws for which Ally campaigned. The October issue of Glamour magazine named Ally, now 21 and a senior at Lake Forest College, as one of the nation's “Top 10 College Women of 2011.”
Ally also is a finalist in the IBD Icons online vote competition to honor people with Crohn's disease or ulcerative colitis who are finding success despite their inflammatory bowel disease. Voting at ibdicons.com ends at 11:59 p.m. Tuesday.
“I can only rave about the work Ally has done,” says Kathleen Ryg, who was the state representative responsible for the bill becoming a law in Illinois.
“I met her on my eighth-grade field trip to Springfield,” says Bain, who remembers being impressed with Ryg and the political process.
“Ally's story is a great civics lesson,” says Ryg, now president of the Illinois chapter of Voices for America's Children, an advocacy group that develops and promotes laws and policies that help children. “She learned how laws are made, had a personal experience due to her Crohn's that could have been avoided. She turned her embarrassment and anger into action to change the law.”
Ally says her parents, Dave and Lisa, and younger brother Trevor gave her the support and inspiration to fight for the law.
Trevor, now 20 and healthy, needed two brain surgeries by the time he was 11 to help him overcome epilepsy. Their mom, who testified with Ally before legislators, says both her children celebrate “second birthdays,” which they call “Freedom Day,” to celebrate the surgeries that allow them to live healthy lives.
“I was so sick during high school that everything else was of secondary concern,” says Ally, who was a 68-pound freshman at Vernon Hills High School when a perforated colon almost killed her.
“I woke up screaming in pain,” Ally remembers. “I had surgery that night.”
The six-hour emergency surgery proved a difficult and emotional experience for the 15-year-old girl.
“I woke up with a temporary colostomy,” Ally says. While peers were showing off bikinis that summer, Ally stayed inside or wore baggy clothes to hide her colostomy bag. She missed a chunk of her sophomore year because of the operation to reverse the colostomy, and she lost part of her junior year to another surgery.
As successful as she was in her activism, meeting with celebrities and granting interviews, she faced other challenges.
“I was bullied in high school,” Ally says. “It was my closest friends who ended up being my bullies.”
Jokes about her being “a Holocaust victim” or having an eating disorder morphed into a mean-spirited nickname of “chipmunk cheeks” after steroids used in her Crohn's treatment made her gain weight. The local dry cleaner had altered Ally's clothes so many times, the tailor asked Ally's mother, “Just how many daughters do you have?”
Now a proportional 105 pounds spread over her 5-foot-1 petite frame, Ally is a patient of Dr. David T. Rubin, co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center.
“Every time I hear her story I start crying, and I've heard it a hundred times,” Rubin says, adding that Ally has been in remission for six years and is a shining example of what can be accomplished with recent advances in treatments and new medications. “With the right therapy and the right approach, there is no need for people to feel as if they have limited potential with this diagnosis.”
“I can do anything and eat anything,” Ally says. “It's been great.”
Her passion as an activist landed her an internship last summer with the U.S. Department of Justice in Washington, working in the civil rights division on rights for people with disabilities. Ally says she might want to go on to law school someday, and she has talked with state Rep. Carol Sente and U.S. Sen. Dick Durbin's staff about starting the national legwork to make Ally's Law a federal law.
Having someone as energetic and young as Ally speaking out about inflammatory bowel disease is inspiring, says Marianne Floriano, deputy regional director of the Illinois chapter in Des Plaines of the Crohn's and Colitis Foundation of America. Teenagers at Lake Zurich High School and Highland Park High School recently talked about their issues with inflammatory bowel disease and are helping “educate people,” Floriano says.
While Ally is in remission and no longer must cope with the sickness and bullying, she says her disease helped her find her voice.
“I've really learned so much about myself,” Ally says. “I can be resilient, tenacious and passionate about life. Cliche as it sounds, it's made me who I am. I've grown up thinking you should turn negatives into positives when you can.”
Humiliation for Vernon Hills teen fuels activism
Article updated: 10/31/2011 6:27 AM
By Burt Constable
At an age when some girls feel they will die of embarrassment if they are caught wearing the wrong shoes to the mall or let a boy get a glimpse of them on a bad hair day, 14-year-old Ally Bain of Vernon Hills was sobbing in agony and about to soil herself in a public store.
“I suddenly had severe abominable pain. I knew I had a matter of minutes to find a restroom or have an accident,” Ally says, remembering that June day in 2004. “I was so desperate for a bathroom, I was bent over and everything. It was the first time I felt my disease had gotten the best of me.”
Diagnosed at 11 with the inflammatory bowel disease Crohn's, Ally was accustomed to her illness sapping her energy, preventing her from eating pizza and popcorn, forcing her to use the bathroom as many as 40 times a day and inflicting sudden urges that interfered with sleepovers and field trips.
One of those urges struck Ally in 2004 while she was shopping at a large chain clothing store that offered no public restrooms. Ally and her mother begged the manager for permission to use the employees' bathroom. He refused. Ally soiled herself.
“I was crying while walking back to the car, and my mom said, ‘Let's work to make sure that this never happens to you or anyone else again,'” Ally remembers.
“It was such a helpless, horrible feeling,” remembers Lisa Bain, Ally's mother. “I felt such intense anger, like I'm sure any parent would. Looking back, that was a pretty bold promise.”
Nonetheless, they realized that goal in August 2005 with the passing of Ally's Law, also known as The Restroom Access Act, which made Illinois the first state to guarantee bathroom rights to people with medical needs. Eleven other states now have similar laws for which Ally campaigned. The October issue of Glamour magazine named Ally, now 21 and a senior at Lake Forest College, as one of the nation's “Top 10 College Women of 2011.”
Ally also is a finalist in the IBD Icons online vote competition to honor people with Crohn's disease or ulcerative colitis who are finding success despite their inflammatory bowel disease. Voting at ibdicons.com ends at 11:59 p.m. Tuesday.
“I can only rave about the work Ally has done,” says Kathleen Ryg, who was the state representative responsible for the bill becoming a law in Illinois.
“I met her on my eighth-grade field trip to Springfield,” says Bain, who remembers being impressed with Ryg and the political process.
“Ally's story is a great civics lesson,” says Ryg, now president of the Illinois chapter of Voices for America's Children, an advocacy group that develops and promotes laws and policies that help children. “She learned how laws are made, had a personal experience due to her Crohn's that could have been avoided. She turned her embarrassment and anger into action to change the law.”
Ally says her parents, Dave and Lisa, and younger brother Trevor gave her the support and inspiration to fight for the law.
Trevor, now 20 and healthy, needed two brain surgeries by the time he was 11 to help him overcome epilepsy. Their mom, who testified with Ally before legislators, says both her children celebrate “second birthdays,” which they call “Freedom Day,” to celebrate the surgeries that allow them to live healthy lives.
“I was so sick during high school that everything else was of secondary concern,” says Ally, who was a 68-pound freshman at Vernon Hills High School when a perforated colon almost killed her.
“I woke up screaming in pain,” Ally remembers. “I had surgery that night.”
The six-hour emergency surgery proved a difficult and emotional experience for the 15-year-old girl.
“I woke up with a temporary colostomy,” Ally says. While peers were showing off bikinis that summer, Ally stayed inside or wore baggy clothes to hide her colostomy bag. She missed a chunk of her sophomore year because of the operation to reverse the colostomy, and she lost part of her junior year to another surgery.
As successful as she was in her activism, meeting with celebrities and granting interviews, she faced other challenges.
“I was bullied in high school,” Ally says. “It was my closest friends who ended up being my bullies.”
Jokes about her being “a Holocaust victim” or having an eating disorder morphed into a mean-spirited nickname of “chipmunk cheeks” after steroids used in her Crohn's treatment made her gain weight. The local dry cleaner had altered Ally's clothes so many times, the tailor asked Ally's mother, “Just how many daughters do you have?”
Now a proportional 105 pounds spread over her 5-foot-1 petite frame, Ally is a patient of Dr. David T. Rubin, co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center.
“Every time I hear her story I start crying, and I've heard it a hundred times,” Rubin says, adding that Ally has been in remission for six years and is a shining example of what can be accomplished with recent advances in treatments and new medications. “With the right therapy and the right approach, there is no need for people to feel as if they have limited potential with this diagnosis.”
“I can do anything and eat anything,” Ally says. “It's been great.”
Her passion as an activist landed her an internship last summer with the U.S. Department of Justice in Washington, working in the civil rights division on rights for people with disabilities. Ally says she might want to go on to law school someday, and she has talked with state Rep. Carol Sente and U.S. Sen. Dick Durbin's staff about starting the national legwork to make Ally's Law a federal law.
Having someone as energetic and young as Ally speaking out about inflammatory bowel disease is inspiring, says Marianne Floriano, deputy regional director of the Illinois chapter in Des Plaines of the Crohn's and Colitis Foundation of America. Teenagers at Lake Zurich High School and Highland Park High School recently talked about their issues with inflammatory bowel disease and are helping “educate people,” Floriano says.
While Ally is in remission and no longer must cope with the sickness and bullying, she says her disease helped her find her voice.
“I've really learned so much about myself,” Ally says. “I can be resilient, tenacious and passionate about life. Cliche as it sounds, it's made me who I am. I've grown up thinking you should turn negatives into positives when you can.”
