"I had no idea that I had actual brain surgery."
While arteries take oxygen-rich blood from the heart to the brain, veins carry the oxygen-depleted blood back to the lungs and heart. A brain AVM disrupts this vital process. An arteriovenous malformation can develop anywhere in the body, but it occurs most often in the brain or spine. The congenital abnormality is so rare that it affects less than one percent of the population. It could rupture and bleed into the brain and cause significant neurological damage. It can also be fatal.
When doctors at Children’s Hospital of Philadelphia discovered what was causing Renee’s intense headaches, they decided to act quickly and operate. She awoke to her family gathered by her bedside, weeks of physical therapy ahead and a new passion: the science of the brain. A passion that would lead her right to Ursinus College.
Re-learning how to do simple tasks that usually come naturally can be frustrating, especially for an active, energetic nine-year-old. After her surgery, Renee began an arduous four and-a-half-week rehabilitation plan that would get her moving again. She worked on fine motor movements in her hands and ankles, even practicing getting on and off a school bus to prepare her for her return to normalcy at home and at school.
Physical therapy would continue for more than a year after she left the hospital, but before that, she was determined to walk out on her own.
“My main supporter was definitely my mom,” Renee says. “She would hold my hand when I was sad at night, but when I was in physical therapy, she gave me my space because she knew that I needed to do it on my own.”
She took one small step. Then another. And before she knew it, she was able to walk out of the hospital by herself.
What was that moment like? Butler gets emotional thinking about the day. “I felt like there was a light at the end of the tunnel,” she says, tears welling in her eyes. “I was so proud of myself and everything I achieved.”
Butler’s time in the hospital sparked a passion for learning about the brain, but also for helping children who might be experiencing something similar.