A baby’s profile is looking down in Seth Bailey’s drawing. The viewer can see inside the baby’s head, which is filled with a flurry of colors and shapes, drawn with colored pencils and a Sharpie marker.
“The cloud means mild depression. The puzzle piece means autism. [The] lightning bolt is ADHD,” Seth Bailey said. “[The] question mark..?”
“All the other stuff we don’t know,” his mother Sarah Bailey said.
Seth Bailey is 10 years old now and submitted his drawing, called "Self-Portrait," to the EveryLife Foundation’s Rare Artist contest this past August. The competition highlights the work of artists with rare diseases and offers winners the opportunity to work with an advocacy coach in the nation's capital during Rare Diseases Week. Bailey is one of two finalists in his age category.
As a baby, Bailey experienced infantile spasms, a serious type of epilepsy. Doctors often cannot determine the underlying cause of these spasms.
“It only happens to infantiles, hence the name,” he said. “It messes with your brain. Sometimes it happens in your family a lot, or sometimes just boom – out of nowhere.”
Bailey’s spasms, he said, were out of nowhere, and they rewired his brain. At the top of the drawing, Bailey includes a wire box with wires entering his head to show this change. He said his older brother gave him the idea.
Sarah Bailey is a literacy program specialist at Dillingham Elementary School and an artist herself; she won a Rare Artist award in 2021. She said after outgrowing the spasms, Bailey was diagnosed with autism, ADHD, and Sensory Processing Disorder. But, she said her son is not defined by his challenges.
“He's got exceptional qualities and gifts about him, even though he's got his own little quirks and ways about it,” she said.
“Like high-level reading,” Bailey said.
If Bailey’s entry wins, he will be invited to Washington DC in February during Rare Diseases Week. There, winners will speak to members of Congress on policy changes for people impacted by these diseases. Winners will also receive a $500 cash prize.
Bailey said he wants to spread awareness about infantile spasms, saying in his artist statement he hopes to see more research on why infantile spasms happen, and how to prevent them.
You can vote for your favorite art pieces at https://everylifefoundation.org/rare-artist/voting/. The deadline for voting is November 20.
Get in touch with the author at christina@kdlg.org or 907-842-2200.
