Art Piece Name: ‘I Am’

Program: KIF1A

Gunnar’s Story:

Gunnar was slow to reach his milestones and walk. It was difficult for him to get up from the floor (hypotonia). By three, Gunnar was toe-walking with poor balance, and he began to suffer injuries from frequent falls. He needed to take constant breaks when walking and playing, and he said that his legs felt “jumpy”.
Gunnar started physical and occupational therapy, underwent serial casting, and started wearing leg braces. Despite these interventions, there was no improvement in his condition and his mobility continued to decline.

Genetic testing revealed a nano-rare mutation of Gunnar’s KIF1A gene. Initially diagnosed with Spastic Diplegic Cerebral Palsy, Gunnar’s diagnosis changed to KIF1A Associated Neurological Disorder and Hereditary Spastic Paraplegia.

Gunnar had surgery to reduce spasticity and orthopedic surgery to improve mobility, and he continues to work very hard to maintain his current level of ambulation. He is an ambulatory wheelchair user and enjoys playing adaptive sports – his favorite being wheelchair basketball.

Gunnar likes to make art projects and build Legos with his younger sister, Raegan. He also enjoys helping in the kitchen and baking with his mom and playing board games with his dad.

Gunnar’s favorite movie is Ghostbusters. Seeing the firehouse and other locations from the movie was a dream come true for Gunnar during a trip to NYC for a KIF1A study.

Gunnar is kind, funny, and loves to crack jokes. But he’s also brave and tough. Even on his worst days, if you ask him how he is doing, he will give you a thumbs up. Gunnar truly is rare and one of a kind.