To raise awareness and show support for those who are affected by Epilepsy, March 26 has been designated Purple Day! Our son has a genetic disorder called Dravet Syndrome. It is the result of a spontaneous genetic mutation in the SCN1A gene. The main effects of Dravet Syndrome are epilepsy and severe intellectual disability, but he is extra so there’s more — I call it epilepsy with bonus features. Included is his list of “bonuses” is scoliosis, inability to maintain body temperature, poor circulation, mobility issues, low tone, speech disorder, lack of fear, anxiety, OCD. I’m sure there are others that seem so commonplace to me that I don’t even think about mentioning them! He is essentially a toddler in a man-sized body.
It hasn’t been (and will continue to not be) an easy journey. But along the way we have met countless truly wonderful people in the form of teachers, nurses, doctors, therapists, students, coaches, EMTs, random people at HEB. There are really a lot of good people in the world. Isaac is incredibly social and always wants to talk to everyone he sees, so we have had the opportunity to meet hundreds, maybe thousands of people coast to coast and from all over the world. People in general are very kind. You can remind yourself that I said this the next time you’re watching the news!
In spite of the challenges, we’re so thankful that Isaac is happy and content. We’ve been blessed with access to good healthcare, which I know not everyone can say. He is loved and cared for by many around the world. We have a strong support system in our family, friends, and Church. And we have learned to take joy in little things — moments and small victories.
There’s no better example of pure joy than this face right here! This is the face we get every time he completes a task or remembers something correctly. Joy!
“I did it!” “I figured it out!” “That’s the right one!” “I got it!”
Join us in wearing purple for Isaac and Epilepsy Awareness on the 26th, and take a moment to be thoughtful of the ones around you who may be struggling. Especially the little ones and their families who are feeling lost and overwhelmed right now– it’s so hard facing an unknown. Isaac was 6 years old before he had a diagnosis, which not only provides some answers but also a direction to proceed with treatment and some idea of what to expect on the journey.
And remember to smile amid the challenges and find joy in the moments!
When Isaac smiles he lights up the room. In spite of challenges Isaac is such a blessing. Papa