The past two months have been a blur of excitement and change. November marked epilepsy month and the one year anniversary of our non-profit organization. In November, we focused our advocacy efforts on exploring how pediatric epilepsy effects all aspects of a patient’s family. In a series of interviews with my seven-year-old son, Preston, we learned how Mickie’s diagnosis and brain surgery affected him. We received feedback that this type of dialogue was helpful to families in understanding that they are not alone and preparing them for the road ahead. Due to popular demand, we will continue these interviews and post them on our Mickie’s Miracles YouTube channel.
We kicked off Infantile Spasms Awareness Week #ISAW2017 on December 1 in our nation’s Capital! Mickie’s Miracles was a proud partner of the Infantile Spasms Action Network at the coinciding American Epilepsy Society Annual Meeting. I was honored to share Mickie’s story to the Congressional Neuro-Science Caucus and enjoyed an office visit with Congressman Garamendi’s staff to share the new “STOP” IS mnemonic. We have plans to meet the Congressman when we are back in the Spring as attendees of the World Orphan Drug Congress.
The week was capped off with the realization of one of my biggest dreams. During the blur of survival mode, I would ask myself over and over why I was not informed on the catastrophic affects seizures have on a baby’s brain prior to this experience. I made a mental note that when I could I would create a public service announcement to help families like ours. After receiving a generous grant from the Child Neurology Foundation, I enrolled my incredibly talented friend, Hein Muller, to make this dream a reality. We proudly debuted our Infantile Spasms PSA on social media and have already received feedback that families are taking action after viewing the subtle seizures in the video.
We have also been active on our local radio station KUIC. Prior to my trip to D.C., I was interviewed by John Young during the morning show and then was invited back to record a “Helping Your Hometown” segment that will air the first week of January 2018. Check out the interview and segment here.
The truth is the raw vulnerability of sharing Mickie’s story heals a part of my scarred heart, honors the ones who have lost the fight and offers hope to future IS families. If you are reading this, you are a part of a movement that is growing. A wave that is bringing epilepsy out of the darkness and into the light where treatments will be inspired and babies will be spared.