30 Sep Alefiya’s Superhero Story
Alefiya is a SLC13A5 Superhero. Here are a few fun facts Alefiya’s parents shared with us!
- Name: Alefiya
- Age: 13
- Homestate: Virginia
- Superhero Power: Sweetie pie with a contagious smile
- Favorite places to visit: neighborhood, parks, water parks
- Favorite Transportation: walking
- What she loves most: her family, friends, animals, chocolate and being outdoors
Alefiya’s Medical Journey
SLC13A5 Epilepsy is so much more than just seizures and epilepsy. For Alefiya, SLC13A5 Epilepsy includes a painful movement disorder. Alefiya has been struggling with debilitating episodes of muscle tightness in her back. These episodes can last for more than an hour and they start with no warning and for no apparent reason. These episodes are different than seizures because she remains fully alert during them and they do not show up on an EEG. Alefiya is a reminder of how complex SLC13A5 Epilepsy is and how urgent our need is to find better treatments for our community.