The Story of Shea

At 6 months old, the signs were subtle. The parents noticed eye blinks and tremors, in their daughter’s tiny hands. As time passed, she began missing the key developmental milestones like rolling over, sitting up, crawling, and walking. An EEG showed what her parents and her doctor already knew. She was having epileptic seizures.

As is often the case with infant onset epilepsy, her symptoms and development fit no known pattern. Her disease couldn’t be given a name or a cause. At age 4, the seizures worsened. It was horrifying for her parents to watch their daughter having her seizures, but she had hundreds of them over the course of her life, and they learned to adapt.

Her seizures took a toll. She developed autism and scoliosis. She had a better vocabulary at four than she had twelve. She wore a brace and needed 24 hour care. The amount of attention she required was substantial, but it was not much of a burden to the parents. Her father explained that being with her was like living between the second hands of a clock. “You just had to shut the out the world and slow things way down and just sit with her and let her point to things she wanted you to interact with.”

One night, as he slept, she died. He heard nothing, and there was no evidence of a seizure. The relationship between her brain, heart, and lungs simply broke down.

The Gift represents a collaboration project between Andrew Polk and Research Scientist, Michael Hammer  ,  whose research spans the fields of medical genetics and human population genetics. In recent years, his research team has successfully employed next generation sequencing technologies to identify genetic variants causing neurodevelopmental disorders in undiagnosed children.

The Gift was part of Intersecting Methods, a portfolio Exchange project organized by Matthew McLaughlin in which 12 artists collaborated with 12 scientists.