Meet Amelia!

A Joyful Spirit Finding Her Voice

Amelia is a joyful, loving girl who brings so much light to her family. She loves school, participating in class, and exploring the world around her. Despite the challenges she faces, she is eager to learn and always wants to be involved. 

In 2018, after years of doctor visits and unanswered questions, she was diagnosed with SYNGAP1, a rare genetic disorder that affects brain development and communication. SYNGAP1 can cause epilepsy, intellectual and developmental disabilities, sensory challenges, motor delays, autism, sleep difficulties, and behavioral challenges. For her, this means she requires constant supervision and assistance with many daily activities. 

Communication is one of her greatest challenges. Amelia uses an AAC device and receives speech, physical, and occupational therapy, along with 30 hours of ABA therapy each week. Her family hopes to provide additional speech therapy and equine therapy to help support her communication, independence, strength, and safety. 

Amelia’s family also gives back by supporting newly diagnosed SYNGAP1 families throughout Latin America with information, guidance, and advocacy in Spanish. With continued support, they hope to help her grow in confidence, communication, and independence while allowing her joyful personality to shine.