Stephen A. Inge, an employee and son of the co-owner of the now-closed Iota Club, died earlier this month at the age of 41. For decades he struggled with a very rare condition known as Von Hippel-Lindau (VHL) syndrome. causing tumors to grow throughout the body.
In his memory it will be this Saturday, November 15th.
Instead of flowers, the family is asking for donations to the VHL Alliance.
Inge was the son of Jane Negrey Inge, who (along with her brother) owned the popular Arlington music and arts venue, Iota Club. The club closed at 2832 Wilson Blvd in Clarendon in 2017 after more than two decades.
Stephen worked there for several years as an administrative assistant and with musicians on their pre-show arrangements.
“He’s always been very proud of Iota and his contribution to Arlington,” Jane Negrey Inge told ARLnow. “He always told me that.”
Stephen attended Yorktown High School and was a pitcher on the baseball team. Shortly after graduating from high school, he had his first medical incident and was diagnosed with VHL that went through a series of surgeries, scans, and recoveries.
VHL is a rare disease with only about 10,000 cases in the United States. It causes tumors to grow throughout the body, including benign and malignant ones. More often the disease is transmitted genetically. But in Stephen’s case it was a de novo case, meaning that it was related to a spontaneous genetic mutation and not inherited from a parent.
“Stephen had a great job at VHL handling the impact,” says Jane. “After five brain surgeries, two spinal cord surgeries, a partial nephrectomy and other incidents … he would just be as happy as possible and want to see his friends.”
“His legacy is to love the people in the community, to love his friends,” she says.
He loved making people laugh, especially his doctors, his mother says, and had the same group of friends from his time in Arlington public schools. More recently he fell in love with horticulture and could often find potted plants on Franklin Road near Clarendon. He thought it was “the best occupational therapy ever,” notes Jane.
Stephen also spent considerable time in Richmond with his father Barclay Inge and his family.
Prior to joining the Iota Club, he was a teaching assistant for students with special needs at Swanson Middle School in Westover. His mother says he has a natural talent at that because he understood the students.
“Stephen was very intuitive … and very sensitive to the needs of the children,” says Jane. “And he loved the job.”
However, when another spinal cord operation restricted his mobility, he turned to his mother and uncle at the Iota Club.
Stephen worked there for about six years under his good-natured alias “Burns” and befriended other employees there.
“It was family,” says Jane. “Without [Iota’s staff] Support I couldn’t have gotten involved in Stephen’s medical problems. Like family, they have all helped my brother and me keep Iota going … people care about people, and I’m telling you, I’ve seen so much of them. It is wonderful.”
Stephen started living independently about 13 months ago, right at the start of the pandemic. His mother says it was an incredible achievement for him and the family. Although, of course, the pandemic made it difficult.
“It forced us to really be apart, which was beneficial in a number of ways,” says Jane. “But it prevented us from having contact that I would have liked to have had.”
Jane knows that she is not the only one whose heart is now broken by the death of her son. So she looks forward to meeting tomorrow afternoon to hear everyone’s memories and celebrate Stephen’s life.
When asked what she will remember most about her son, Jane said “everything”.
“I will remember everything about him. His courage, his cleverness, his understanding, ”she says. “I will think of him forever every day … He is my heart.”
Photo courtesy Jane Negrey Inge
Comments are closed.