Knowing you’re not alone and connecting with others who share the same experience with Dravet syndrome can be incredibly valuable.
Parenting a child with such a specific set of symptoms and severe delays is lonely, and you can feel like the only one. After finding other families who live with the same challenges of this severe form of epilepsy, you could immediately feel understood and supported without even having to explain your situation.
If you would like to embrace the opportunity to connect with other families across the country—or even globally—via social media to talk about the various ups and downs of having a child with Dravet syndrome, then click here.
Sometimes, we all need to know that we’re not alone.
When you want to give up because each day is filled with such excruciating challenges that there isn’t room for anything else, and you can’t imagine continuing this existence for a lifetime—you are not alone.
When you want to scream because doctors are dismissive and disinterested in your challenges—even though it’s their job AND you’re paying them a lot of money to help manage your disease—you are not alone.
When you stop opening your mail because your medical bills have piled so high that you are afraid to even look at how much further you’ve fallen into debt—you are not alone.
When strangers and loved ones speak thoughtless and ignorant words about the disease, often without even realizing it, but it really cuts right to your core—you are not alone.