Opening the Door to a Brighter Future by Ethan Glass – A lover of all doors

*Mixed media: Doors open (See photos)

Program: DYRK1A

Ethan’s story:

At just 3 weeks old, it became evident that Ethan was unable to thrive with the body he was born with. Each passing day, his weight would continue to remain unchanged or regress. He was unable to hold onto nutrition, with the majority being regurgitated to near asphyxiation. Milestones were missed and progress was minimal. Every attempt at a solution led to more questions – a circular tale of hope and disappointment. After lengthy hospital stays, surgeries, and specialist visits, stability for Ethan was found with a feeding tube, and a potential answer to his troubles through genetic testing by the Undiagnosed Disease Network.

Ethan carries a unique mutation that has never been identified before in a gene most have never heard of. The small seemingly insignificant change in his DNA causes an enormous challenge with his ability to navigate the world. His speech and understanding are impaired; and seizures, choking, and falling are constant concerns. Despite his challenges, Ethan has taught his family more about bravery, determination, and purpose than they ever thought was possible. He attends school and participates in class, tries new foods, and always gets right back up off the ground no matter what. He is filled with joy, makes others feel special, and lights up the room every time he enters. Most importantly, he is unconditionally loved and supported, especially by his amazing older sister. Ethan loves to ride her as a horse, swing with her on the playground, and hold onto her hand whenever and wherever. When not giggling with his sister, he loves movable mechanical objects to no end: garages, automatic doors, escalators, and elevators.