Allie was diagnosed with tuberous sclerosis complex (TSC) after she began having seizures at five-weeks-old. Throughout her young life, her seizures were very difficult to control. At the age of four, she underwent brain surgery with a resection of two tubers. The surgery decreased the duration and frequency of the seizures, but she continued to have breakthrough seizures. Through research, she was one of the first to participate in a clinical trial with Afinitor for the treatment of her seizures. Afinitor has been life changing for Allie. Not only has it helped with the control of her seizures, but it has also helped with tumor growth.
Allie turned 21 this year. She graduated from high school and has taken some classes in community college, and she is currently working for the school system as a preschool assistant.
Allie loves life and lights up the room when she walks in. She is one of the happiest people her family knows and always has a smile on her face. As Allie has gotten older, she has become very interested in TSC and wants to help others in any way possible, as she recently found out she has the TSC 2 gene.
Over the past 20 years research on TSC has advanced significantly. Allie’s family has seen incredible new therapies for individuals with TSC and are excited for what the future of TSC research holds. Allie could not be where she is today without her incredible medical care and the advancements in TSC research.
Allie’s message for everyone who has TSC is to “Stay strong and be positive. Although I have had some difficult times, it has made me who I am. God has given me an awesome life, and I enjoy and cherish every day.”
~ A very special thank you to Dr. Franz, Dr. Kreuger, Karen Agricola NP, and the entire team at the Cincinnati TSC Clinic, along with the support of the TSC Alliance. Allie’s family thanks God every day for Allie and the wonderful care she has received!
