I arrive at the Shelby County Arts Council center. It’s early afternoon. I am here for the annual Helen Keller Art Show.
The parking lot is full of children. The kids are all dressed in their Sunday best. They are walking toward the building, accompanied by parents.
Several children hold white canes. Other kids use wheelchairs. Some are carried by their parents.
I see one blind young man run headfirst into a brick wall. He begins to cry. His mother holds him and begins crying alongside him. She is weepingly apologizing to her son for taking her attention off him.
“Hello,” says a tiny voice behind me.
“Hello.”
“My name’s Henrietta,” says the little girl. “What’s yours?”
Henrietta is using a pink wheelchair. A seatbelt is buckled around her tiny waist. Her face is cherubic. She wears a black and white dress with a jean jacket. Her eyes are looking past me.
“My name is Sean,” I say.
“Hello, Sean.”
“Is your art in the art show?”
“Oh, yes,” she says. “I won a Helen Keller award. I’m a winner.”
“Congratulations.”
“Thank you.”
Henrietta has
low vision. She can’t see well. Her eyes are just one of the many organs of her body with problems. Her physical issues stem from a mitochondrial disease.
The mitochondria are what turn sugar and oxygen into energy, so when your mitochondria don’t work, this affects different systems of your body: your brain, kidneys, muscles, heart, eyes, ears. Take your pick. A mitochondrial disease is not for wimps.
“I spend a lot of time in hospitals,” says Henrietta. “Sometimes, all I do is live in a hospital.”
The disease affects Henrietta’s immune system. Whenever Henrietta gets a common cold, it’s a big deal. When she gets the flu, it’s a national emergency; get her to the ICU.
“You must be a pretty fearless person,” I say.
“No way, I’m not fearless,” she says. “To be…