Amanda’s journey has been a roller coaster, with great highs and treacherous lows. We’ve learned to truly appreciate the small victories in life and always celebrate the good moments.

We started this journey when Amanda was 6 months old; 5 days before her first Christmas. Her first seizure occurred on the left side of the body and lasted 45 minutes. We started her 1st drug and 20 days later, she had another partial seizure but this time it occurred on the right side of the body. We started to notice absence and myoclonic seizures when she was 10 months old. She was given the possible diagnosis of Dravet Syndrome before she turned one and was already having 100’s of myoclonic seizures a day. Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy.

The next four years of our life were horrific – she experienced many different seizure types and tried multiple treatments including the Ketogenic Diet. We had a 3 year period where she had 1,000’s of myoclonic and atonic (head drops that would knock her to the floor) seizures a day. It’s difficult to think about the tough times and even harder to see other Dravet children suffering the same inflictions every day. Change is very common with Dravet syndrome and thankfully her seizures and triggers have evolved through the years. She is much less sensitive now compared to when she was younger.

When Amanda has a long convulsive seizure, she has regression for days/weeks. One day you are speaking to your child, asking them to do normal activities like getting dressed, going to the bathroom and the next day you need to feed them, help them walk and get undressed. She has had too many regressions in her life, enough to ensure we avoid seizure triggers at all cost which are heat, physical activity, fatigue and illness.

Our 10 year daughter, Amanda, is a rare treasure. She lives in a very controlled environment but is a happy, silly girl that lights up a room with her sparkling eyes and bubbly laugh.

Amanda is currently on the modified Atkins Diet, 3 anticonvulsants and needs her beauty sleep (aka daily naps). She continues to have daily seizures but I am proud to say Amanda is potty trained, knows her ABC’s, can write her name and most recently, can identify the numbers 1-12. She goes to school with a 1:1 aid and absolutely LOVES riding the bus – it is the highlight of the day.

Please visit her website to learn more about Amanda’s journey and Dravet Syndrome:

www.HopeForAmanda.com