Austin's A-Team 3.0

Austin's A-Team is back! We are incredibly humbled by the ongoing support of AJ by his community. For those of you who are new to our community, WELCOME! Here is some background about our favorite superhero, Austin:

Austin (aka AJ) has a rare neurological disease called Pontocerebellar Hypoplasia type 6 (PCH-6). This disease is so rare that there are only 40 diagnosed cases worldwide and limited research and funding exist to support his condition. PCH-6 causes Austin to have seizures, significant physical delays and regressions, and the need to receive all of his nutrition, hydration, and medication through a g-tube. He is a wheelchair user and needs adaptive seating to support his body and head. He uses an eye-gaze communication system and is learning "yes" "no" through eye gaze to communicate.

Because of Austin’s complex medical needs, a full-time nurse is needed to help his family manage his ever-changing and challenging day-to-day needs. All funds raised through Austin’s A-Team will go directly to AJ’s family to help pay for the cost of full-time nursing care, as well as equipment, home renovations, and other costs associated with his care and progress. No amount is too small! :)

Austin also requires multiple therapy appointments each week and regular trips to Lurie Children’s Hospital and Shirley Ryan Ability Lab to monitor his progress and identify the tools and supports needed to help him develop. AJ is also part of a new drug trial that requires the family to travel back and forth to Ohio to meet with highly specialized doctors and participate in the ongoing study.

AJ always perseveres when things get difficult and is motivated to do new things. He loves school, watching Frozen, anything to do with his amazing big brother Colin, and going for walks in his wheelchair. Austin smiles every day, and his positive energy is contagious!