Photos illustrate life with genetic disease

Allison Harris

In one photograph, an 18-year-old boy with cropped, dark hair and rounded features clings to his mother while she helps him exercise. In another, the same boy sits in a wheelchair with a homecoming sash proudly draped over his shoulder.

The photographs were part of a gallery exhibit created by advertising graduate student Bill Reeves. Reeves used 23 black-and-white photographs to illustrate the life of Nathan Huf, a man with a rare chromosomal disease, in Reeves’ first U.S. exhibit Saturday.

“It’s really less about a sick boy and more about this mother’s love,” he said.

Reeves exhibited his photo documentary at Bowers Gallery to about 40 guests. Huf was the oldest known living male in the world with trisomy 13 before he died on Jan. 31 at 21 years old.

People with trisomy 13 have an extra copy of their 13th chromosome. Eighty percent of trisomy 13 patients die within the first month of life, according to the National Center for Biotechnology Information’s PubMed health website.

Reeves said he learned about the story on an assignment to photograph Granger High School’s homecoming football game in 2007.

“I really wanted to know what it was about Nathan that inspired an entire community to unanimously vote him for homecoming king,” he said. “That was amazing to me.”

Reeves said he wanted to show the special relationship between Nathan and his mother Lillie Huf, who raised him with only limited assistance from her husband. Six of the photographs feature Nathan with his mother.

The event raised $1,655 for Dell Children’s Medical Center of Central Texas, a facility that often cared for Nathan, Reeves said. Lillie Huf said the fact that the event was raising money for charity made her proud.

“He was somebody who needed 24-hour supervision, and even after his death, he’s helping others,” she said.
Spencer Selvidge, a graduate photojournalism student, said he had known Reeves for two years and that the exhibit changed his outlook on life.

“You appreciate everything a little more,” he said. “Everybody takes some things in life for granted, and maybe you shouldn’t.”