Children & Youth with Epilepsy

Pepper

Pepper

Pepper's World

The girl with the porcelain skin, bright hazel eyes and sunshine smile. While Pepper's birth was that of any other neuro-typical baby, epilepsy entered our lives when she reached 9 months of age. We will never forget that frightening morning at the cottage, away from family and far away from the comforts and supports of home. On a beautiful, typically peaceful Muskoka morning, Pepper had the first of what would become thousands of seizures to date.

The chaos of that morning and the days which followed are reminders of the unpredictability of this disease. Since that time, Pepper has been diagnosed with a global developmental delay, she is non-verbal and requires support for all of her daily routine. The exact cause of her seizures is still, to this day, undetermined. We have faced a number of unexpected challenges, such as the right to have rescue medication administered at school, the loss of funding for assistive and adaptive devices for Pepper, as well as the need to educate people with misconceptions of the nature of epilepsy.

Although Pepper has been free of tonic-clonic seizures for over a year, we have recently been witnessing absence seizures. In addition to the sedating medications she requires, Pepper has been on the ketogenic diet since mid-2015. We are grateful to all the healthcare workers and researchers out there working to make her life, and the lives of all those impacted by epilepsy, better. You are all heroes to us. Thank you to all the healthcare heroes we know in this world, to Katie's Run for fundraising for epilepsy research. Thank you for everything you have done for our courageous girl in purple, who is the strongest of them all.

The Ly Family

Pepper and her family

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