How a Loving Community Raises Dravet Syndrome Awareness

When Shelby Sparks was just five months old, she began having grand mal seizures. Throughout her early years, her family just believed that their daughter had severe epilepsy. Then, when Shelby was seven years old, her father Chuck and mother Lauren wrote an article describing Shelby and their experience. According to the Dallas Morning News, it was this article which changed the family’s trajectory. After publishing the article, someone reached out whose son had similar symptoms to Shelby’s symptoms. Her son had been diagnosed with Dravet syndrome, a rare, genetic, and drug-resistant epilepsy. After further testing, the Sparks family determined that Shelby also had Dravet syndrome. Now, her family and her community work to not just support Shelby, but to help raise awareness.

Dravet Syndrome

As explained above, Dravet syndrome is a rare genetic epilepsy, which may also be considered an epileptic encephalopathy. SCN1A gene mutations cause most cases of Dravet syndrome. This condition is marked by severe and treatment-resistant seizures which begin within the first year of life. The first seizure is often paired with a fever. Dravet syndrome affects males and females equally. An estimated 1 in 20,000 to 1 in 40,000 people has Dravet syndrome. If a child has a seizure lasting for 10+ minutes, a seizure on one side of the body, or a seizure triggered by warm water while under 1 year old, parents should look into this condition. Symptoms and characteristics include:

  • Prolonged (5+ minutes) febrile and non-febrile seizures
  • Status epilepticus
  • Myoclonic, atonic, tonic-clonic, partial, or atypical absence seizures
  • Low muscle tone
  • Chronic infections
  • Sleeping difficulties
  • Unsteady gait
  • Psychomotor delays
  • Cognitive impairment
  • Autonomic nervous system problems
  • Delayed language and speech

Learn more about Dravet syndrome.

Shelby’s Story

After Shelby’s diagnosis, her family grappled with what the future looked like. That being said, they were somewhat relieved. First, the family had learned how to manage Shelby’s epilepsy, although an earlier diagnosis could have stopped her from taking potentially unnecessary treatments. Additionally, it felt comforting to finally have a name and an idea of what was happening. Despite the fact that Shelby still has multiple weekly seizures, and monthly grand mal seizures, the family is confident of one thing: that they are happy and lucky to have her in their life.

Prior to COVID-19, Shelby was an engaged member of her Grapevine community. From greeting fellow community members at church to socializing with her friends, Shelby maintained a huge smile and a love for socializing. Shelby has friends who will help push her wheelchair and her family is always happy to receive some hugs. Even though Lauren, her mother, acknowledges that Shelby doesn’t always understand everything, she says that her daughter is extremely bright, loving, and social.

The family, along with their 16-year-old daughter Allie, recently relocated to the Dallas-Fort Worth area to ensure continued care for Shelby. Allie loves her older sister, especially getting to spend time singing and listening to music together. No matter what happens, Shelby’s community will always rally behind and support her and her family. Through learning about Dravet syndrome to promoting inclusivity, this is the kind of community that really makes a difference.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

Share this post

Share on facebook
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email