As the saying goes, “A picture is worth a thousand words.” But when Brooklyn Xiong was 18 months old, an unexpected moment captured on video literally saved her life.
It happened in the spring of 2013, when the Xiong family was in the throes of planning a wedding for Brooklyn’s aunt. “While my sister and her finance were sampling different kinds of wedding cake, I was taking a video,” recalls Brooklyn’s mom, Suzy. “I just happened to catch Brooklyn in the background, having what we later learned was a seizure.”
Six months earlier, Suzy had noticed patches of white skin on her body and took her to their local pediatrician. A series of tests revealed hardened tumors in Brooklyn’s heart and brain, confirming that she had a rare genetic disorder called tuberous sclerosis.
We were so lucky to have such an incredible resource close to home!
The good news? The tuberous tumors are typically benign. The bad news? They can grow on skin and other vital organs and become hard interfering with normal development, triggering seizures and causing other serious complications.
At first, the Xiongs weren’t terribly concerned. But after watching Suzy’s video, they noticed some unusual movements that suddenly alarmed them. In the midst of playing, Brooklyn’s big bright eyes had sailed off to the left for several seconds. “We were lucky to have caught that episode on video,” says Suzy. Within days, they took Brooklyn to a neurologist, who told them they had a lot more to worry about than patchy skin: It was a seizure; her disease was worsening.
Determined to find a solution to help her daughter, Brooklyn’s mom began looking for specialists in pediatric tuberous sclerosis. Her research led directly to Rachel Kuperman, MD, a pediatric neurologist and codirector of the Jack & Julia Tuberous Sclerosis Center at UCSF Benioff Children’s Hospital Oakland. Suzy was relieved to find a highly recognized center for the comprehensive treatment for the disease less than an hour from their home.
The Jack & Julia Tuberous Sclerosis Center provides specialized care for this complex disease, which affects no two people the same way. We give our patients streamlined access – along with coordinated care – to neurologists, eye specialists, cardiologists and any other expert they may need all in one location, greatly improving outcomes and quality of life.
Brooklyn’s case was, indeed, complicated. She was having up to five seizures a day; identifying the root of the problem was key. As Kuperman, explains: “To find out where her seizures were originating, we performed a video EEG, videotaping her behavior while electrodes measured brain activity. They were coming from the right side of her brain, but we still had to pinpoint the exact site.”
Ultimately, over several months, Brooklyn had four brain surgeries – including implantation of electrode grids to monitor seizure activity and a surgery to remove the part of her brain causing the seizures.
By August 2014, she had gone a full year without a seizure. Says Suzy: “We credit our fantastic medical team for giving our baby back to us. Not only are they experts in the disease, but they were so caring. They took the time to answer our questions and helped keep Brooklyn entertained. She was not a happy camper then, but now she’s a normal four-year-old, who laughs a lot, goes to preschool and loves anything princess!”
And adds Suzy: “We were so lucky to have such an incredible resource close to home!”