Making a Difference Together
By Lauren Shores
Our family’s epilepsy story began in 2014 when our daughter Brynleigh started having focal onset impaired awareness seizures (complex partial seizures). After a week of testing at a children’s hospital, she was diagnosed with epilepsy and a rare genetic disorder called Tuberous Sclerosis Complex (TSC).
Our world was completely changed from that day forward. We left the hospital with two new diagnoses, seizure medications, a rescue medication, and a notebook about living with epilepsy.
Once you are diagnosed with epilepsy, you are truly living with epilepsy. It affects every aspect of your life with daily medications, tracking seizures, and monitoring yourself or your loved one. You might also have to carry seizure rescue medications and use a nighttime seizure monitor.
After failing several medications, Brynleigh was having 25 plus seizures in a 24-hour period. It was heartbreaking to watch our daughter have clusters of seizures each day. In October 2016, she had laser ablation surgery to remove most of her left temporal lobe.
This surgery helped to drastically reduce her seizure burden. Post-surgery, Brynleigh still takes daily seizure medications since new seizures could start again as she grows.
Brynleigh’s journey with epilepsy has been difficult and filled with many challenges over the years. Her setbacks and struggles have also fueled our family to fight for a cure. As a family we advocate for more funding, fundraise for new research, encourage seizure first aid training and education, and spread awareness.
Since Brynleigh started preschool, we have had the support of the epilepsy foundation to educate and train her school team each year. Now we are working on 'Brynleigh’s Act' to make schools seizure safe in Maryland.
Together we can make a difference and have a huge impact for people living with epilepsy!
Reviewed By: Sara Wyen