Today is a day to wear purple and show your support for Cassidy Megan, Maddie Meszaros and others who struggle with seizures.
Epilepsy Awareness Day, also known as “Purple Day,” was founded in 2008 by 9-year-old Cassidy Megan of Nova Scotia with the help of her local chapter of the Epilepsy Association.
Cassidy chose purple because, in some cultures, the lavender flower is associated with solitude and a feeling of isolation. Cassidy often felt excluded from slumber parties and other social events out of fear or lack of understanding and she wanted to change that for other kids being diagnosed with epilepsy.
Maddie, and her mom, Joy, have picked up the banner locally. By sharing Maddie’s journey with epilepsy, they also hope to dispel some of the fears and stereotypes they have encountered.
Madison’s first seizures were subtle and occurred when she was 6. While playing volleyball, for example, she might stop her serve and just stare vacantly into space.
“Sometimes people would laugh,” said Joy. “They joked about her `blonde’ moments.”
These short absence seizures progressed a few years later into grand mal seizures, marked by a loss of consciousness and violent muscle contractions. Joy felt these scary medical crises were enough to prompt friends and even some family members to stay away in fear.
An especially low point for Joy came when a teacher, who had not even bothered to look at Maddie’s records, made a remark and gesture to Joy suggesting Maddie was “slow.”
“Maddie is really bright. She taught herself to read at age 3 and was identified for English and math enrichment,” said Joy. “But the reality is that we were having trouble finding the right medication for her and the one she was making it difficult for her to accomplish what she needed to in school.”
Middle school was an especially difficult time for Maddie. Her body was changing and growing rapidly and her epilepsy was affecting her everyday life. Medicine to control the seizures altered Maddie’s cognitive processing and made it difficult for her to continue to do many of the activities that she loved.
She dropped out of all sports: basketball, volleyball, riding her bike, swimming and soccer, and she even had to repeat a grade.
Things began to change for the better when a new epilepsy specialist named Dr. Patrick Brown arrived at Akron Children’s Hospital.
“Dr. Brown was not only a great diagnostician – doing all the right tests and eventually helping us find the perfect medication for Maddie – he was a great role model,” said Joy. “He told Maddie that he had grown up with epilepsy too, but still achieved his dream of graduating from medical school and becoming a doctor. The best thing that can happen for someone struggling with a chronic illness is to meet others in the same situation.”
Through those difficult years, Maddie said she may have lost friends, but she later realized they must not have been true friends to begin with.
“I have 6 or 7 really close friends, including cousins, who have stayed by my side,” said Maddie.
Maddie still takes about 10 pills a day, but, now they’ve found what appears to be the perfect medication. They hope to wean her off of most of the others.
“Epilepsy drugs are incredibly sensitive,” said Joy. “You get on them slowly, and you get off them slowly.”
Maddie is once again getting A’s and B’s. After taking a few classes this summer, she should be back with her class in the fall.
She loves choir, art, working on school musicals and plans to try a new sport, lacrosse, next year when she starts her junior year.
Like Dr. Brown, she hopes to become a doctor.
“I’m just glad we found the right medicine when we did,” said Maddie. “High school is more difficult – these grades really matter – and I now find it much easier to focus and stay on task.”
The best thing that can happen for someone struggling with a chronic illness is to meet others in the same situation, said Maddie.
“It was fun getting to know Dr. Brown and seeing that epilepsy never held him back,” she said. “It’s nice to know I’m not alone.”