Living with Tuberous Sclerosis Complex
by Diane McMahon
Flying down the beach in her purple and pink cape, 9-year-old Chloe Bredeson’s energy and spirit just might defy gravity. Her ability to soar through life is just one of the superpowers that has earned her the nickname Super Chloe.
"Her bravery and capacity to deal with recurrent and invasive medical treatments and still maintain her exuberance are her real superpowers. Chloe inspires adults, children, family, friends, patients and medical personnel every day of her life."
In April 2010 Chloe was diagnosed with Tuberous Sclerosis Complex (TSC), a life-threatening genetic disease that affects about 1 million people worldwide and approximately 50,000 people in the United States. Her bravery and capacity to deal with recurrent and invasive medical treatments and still maintain her exuberance are her real superpowers. Chloe inspires adults, children, family, friends, patients and medical personnel every day of her life.
Chloe is a giggly girl who loves to make funny faces. Her mother, Amy, is convinced she’ll grow up to be a comedienne. The term tuberous sclerosis rolled off Chloe’s tongue, and she exhibited great patience while teaching this less skilled adult how to pronounce her disease. Amy commented that people frequently think Chloe is trying to say tuberculosis. Chloe made a funny face. “What’s tuberculosis?” she asked, having trouble wrapping her mouth around that unfamiliar word.
TSC causes noncancerous tumors to grow in the vital organs, particularly the heart, brain, skin, lungs, kidneys and eyes. It is the leading genetic cause of epilepsy and autism. In Chloe’s case, abnormal growths in her brain caused her to start having seizures before her fourth birthday. These were the first symptoms that ultimately led to her diagnosis. The seizures have successfully been treated with the medication Afinitor*; she has not had one in two years.
Chloe is not in pain and there are few visible signs of her TSC. She matter-of-factly points out some white spots on her skin—she calls them “Princess Spots”—and tiny bumps across the bridge of her nose and onto her cheeks, creating what is referred to as a “butterfly” pattern; the technical term is angiofibromas. She also has lesions in her eyes. In addition to TSC, Chloe has been diagnosed with Polycystic Kidney Disease and will eventually need a kidney transplant. It is a separate condition, but often related to TSC.
Chloe is more familiar with doctor and hospital visits, MRIs, needles and medication than any 9-year-old should be, but she doesn’t let anything stop her from playing, swimming, reading, going to summer camp and having fun with her big brother, Elijah. This year Chloe is a fourth-grader at Michael C. Riley Elementary School in Bluffton. Her favorite books are from the Amelia Bedelia Collection.
Unfortunately, some people are much more affected by TSC than Chloe has been. Some will never walk or talk. Some have hundreds of seizures a day. Some have had countless brain and heart surgeries and for some the disease is fatal.
While Chloe is the superhero, her mother, Amy, is the other heroine in this story. While Amy quietly filled in details about Chloe’s experiences, it was clear her devotion to and advocacy for her daughter is why Chloe has thrived. Initially unfamiliar with TSC, Amy committed limitless time and resources to researching and providing Chloe with the best care. Amy gave particular credit to Dr. John Bissler, Chief of Pediatric Nephrology and Director of the Tuberous Sclerosis Center of Excellence at Le Bonheur Children’s Hospital, Memphis, Tennessee.
Chloe is taken to Memphis on a regular basis to have MRIs of her brain and kidneys. Chloe’s reward after waking up—she needs sedation to keep her still—is to go to the hospital cafeteria for mint chocolate chip ice cream. Chloe also has been to Disney World twice; the first time through the Make-A-Wish Foundation and again this summer. The family wants Chloe to experience fun, normal childhood things to balance the challenges. Amy said that Chloe has a special song she sings to keep from crying when she gets her blood drawn. It’s a song she learned in Sunday school. “Don’t be scared, God is with you.”
Since Chloe’s diagnosis, she and her family have done whatever they can to raise awareness of TSC and to raise money for the Tuberous Sclerosis Alliance, a national nonprofit organization that works to find a cure. Amy is the chair of Step Forward To Cure TSC—South Carolina, part of a national walkathon hosted in more than 30 cities across the country to raise awareness, money and hope on behalf of everyone living with the disorder.
For the second year in a row, Chloe and her family will host the walk on Hilton Head Island, and they are asking the community to join them. Chloe will be leading the walk and, yes, she will be wearing her pink and purple superhero cape.
Step Forward to Cure TSC
September 26, 2015 • 10 a.m. • Jarvis Creek Park, Hilton Head Island
For more information:
Contact Amy Coyne Bredeson at