California is home to a large number of amusement parks that are beloved by thousands of children and their families.

Of course we love theme parks; it’s American as apple pie!

One family, in particular, has a special little boy named Dylan who delights every time he visits theme parks during family outings. RareConnect.org writes Dylan just loves the bear hugs and the cuddles he gets from the big two-legged, furry storybook characters, who he loves engaging with.

But, behind this affectionate second grader’s happiness, lies another story, an untold story of sleepless nights and worry, just months after he was born.

When Dylan began to experience an acute seizure, his frantic parents were worried sick. Fortunately, the ER doctors took control and within minutes, Dylan underwent a long battery of tests, although, ultimately, they just scratched their heads trying to identify the cause of the seizure.

Although Dylan recovered, his health worsened over the years, suffering from various seizures and developmental issues.

He didn’t have the normal, carefree and happy childhood that most kids enjoy. Eventually, he developed refractory epilepsy and not long ago, Dylan’s doctors confirmed a diagnosis.

He has GLUT1 DS, a rare disease that affects the nervous system and causes a wide range of challenging symptoms, including seizures.

Since it’s difficult to control his seizures, his parents are learning how to try and live a happy life with this new “normal.” It takes courage, love, persistence, compassion, learning helpful tips, and hearing words of wisdom from other caregivers…in addition to working closely with an informed healthcare team.

So, the next time you’re out in public and you notice someone–especially a child having a seizure…

Here are 5 things that you NEVER, ever want to do:

1. Don’t freak out. Don’t shout. Don’t stare.
2. Don’t run away in fear.
3. Don’t call 911—unless their loved ones ask you to.
4. Don’t offer water or food.
5. Don’t put a pencil in their mouth.

Instead, here are 5 things you SHOULD do:

1. Stay calm.
2. Kindly offer assistance, the parents may not need your help.
3. If the parents need help, try to remove sources of danger to keep the child safe. So follow their lead.
4. Keep bystanders away.
5. Be sensitive and supportive during and after the seizure, medical intervention is usually not required.

To learn more, visit: http://www.cdc.gov/epilepsy/basics/first-aid.htm and http://www.g1dfoundation.org/

Be a good Samaritan and pass this article along to help build sensitivity for people with rare diseases, but also to raise awareness GLUT1 DS.