Shortly after Susannah was born, her parents noticed abnormalities in her leg movement, signaling something was extremely wrong. Their sweet little girl was later diagnosed with a frightening and debilitating nano-rare disease, KIF1A, resulting in a significant movement disorder, seizures, and speech and vision challenges. She also experiences an inescapable neuropathy in both her hands and feet that cause deep and painful burning sensations.

However, nothing can stop Susannah from shining a light on the world with her beautiful smile, positive outlook, and sincere devotion to loved ones. Just when life starts to get those around her down, she wraps her strong arms around them for a “Ginormous Suz Hug.” Those hugs are perfect. She inspires her family to live in the moment, get out of their comfort zone, sing at the top of their lungs and laugh until it hurts.

Susannah received her first dose of a personalized experimental medicine in October 2022.