Hayden’s Story

In wrapping up our 5th Annual eRACE 5K & 1 Mile Walk, we wanted to highlight an inspiring story to show the impact of the funds raised during our eRACE and other special events. Lisa S., an Epilepsy Association Board Member and eRACE Committee Member, was an eRACER who fund-raised on behalf of EA. Lisa was the top fundraiser who raised over $3,100! Hayden, Lisa’s son, is three years old and is living with epilepsy. Here is their inspiring story:

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Hayden was diagnosed with a severe form epilepsy known as Dravet Syndrome at 9 months of age. He suffered from his first seizure at just 4 months old lasting 20 minutes, he spent a week-long stay at the hospital where they ran test after test trying to determine what had happened. By the time he was 9 months old he was having over 50 Myoclonic Seizures a day as well as Grand Mal Seizures every other week that could range anywhere from 20 minutes to 3 hours. Hayden spent much of the first year of his life in and out of the pediatric intensive care unit of the hospital. Just after Hayden’s first birthday he suffered from a 2-hour long seizure that caused his respiratory system to crash. He was intubated and taken by life flight to the hospital. Two months later it happened again this time the seizure lasted 3 hours and we nearly lost him. Hayden’s seizures were becoming so severe that rescue medications and daily anti-epileptic drugs were not working for him. In October of 2015 he was started on the Ketogenic Diet, he remained on the diet for a year and a half only suffering from 2 seizures. The diet saved his life.

Due to the severity of Hayden’s seizures it caused him to be non-verbal as well as struggle with his balance and movement abilities. As Hayden grew older so did his tolerance level for the diet, and the seizures returned. Now at 3 years old, Hayden is off the ketogenic diet and back on multiple AED’s. His seizures are currently controlled, only suffering from break throughs with growth spurts and illnesses.

Hayden has been going to physical therapy and has made tremendous strides in his movement abilities. He has also been working with a speech therapist and able to say between 30 and 40 words, with a positive outlook to gain more. The support that the hospital, his doctors, and Epilepsy Association has provided not only to Hayden but our entire family has been life changing during this journey. I encourage you to join and walk with us as we honor Hayden and the rest of the individuals and their families suffering from epilepsy. Let’s work together to eRace the historic stigma of epilepsy.

Scanlon team

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