Sammy Scott (9) suffers from a rare genetic condition called Shashi-Pena Syndrome which is caused by a mutation of the ASXL2 gene. Sammy is one of 50 known people in the world with this condition. He is also hyperinsulinemia where his body produces too much insulin. He needs blood sugar checks throughout the day and must use his feeding tube continuously at night. In addition to these, he has ADHD and sensory deficiencies. Sammy has already had 2 open heart surgeries, had a brain tumor resection and suffers from very severe seizures. Although he is 9 years old, Sammy has the cognitive skills of a 2 to 3 year old and the future is very unknown. Sammy is lucky to have an incredible support system at home – his parents, Sarah + Shawn and siblings, Summer and Shepherd.