Silas Waller in the park

A genetic disorder has dominated large portions of Silas Waller’s life. Getting to college at first required a wheelchair and two buses, but he was determined to get on a path to financial security.

Photo by Daniel Krieger, The New York Times

By Elisha Brown, The New York Times 

Silas Waller has measured his life in hospital stays. He has neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue. The condition makes it hard for him to walk. “My childhood was a constant string of going to and from hospitals,” said Mr. Waller, 18. “My first year of high school, I had over 50 absences, purely because I had that many doctor’s appointments.”

He was just 6 when tumors first appeared on his spine and damaged his sciatic nerve, which extends from the lower back down each leg. The nerve damage, coupled with scoliosis that was diagnosed, impaired Mr. Waller’s mobility. He developed clubfoot and had a series of operations on his foot. As Mr. Waller has struggled with his health, his family has faced difficult times financially. After one operation when he was 7, they ended up living in a homeless shelter.

The family moved to Buffalo for two years because it was more affordable. But by the time Mr. Waller was 13, they moved back to New York City and had to live in shelters again. “I was constantly paranoid,” Mr. Waller said of his time in the shelter system. “I was exhausted because it wasn’t really easy to get a good night’s sleep in any of those places. I was mentally exhausted, too. I was done.”

Mr. Waller’s mother, Lisandra Medina, tried to work when she could and care for her three children. In 2012, she stopped working as a nurse to care full time for her children, which include Mr. Waller’s younger twin sisters, who have cerebral palsy. “The cost of child care alone was astronomical,” Ms. Medina, 37, said. “It didn’t get cheaper as they got older.”

Two years ago, the family moved into an apartment in Harlem after receiving a housing voucher. Mr. Waller liked to sing and draw and wanted to attend an arts high school, but he lost the vision in his left eye and developed nerve damage in his left hand during his adolescence, forcing him to abandon that ambition. So he enrolled in the High School for Health Careers and Sciences in Washington Heights and resolved to make the most of his situation, focusing on his studies and his extracurricular activities.

“I figured, if I’m going to be stuck there for the next three years, I might as well do something to change it,” he said. He signed up for the Navy Junior Reserve Officers Training Corps in his first year there, joining his fellow cadets in cleaning up the schoolyard and organizing food drives around Thanksgiving. “The community service part was pretty neat — the feeling that I was making a difference,” he said.

In his sophomore year, Mr. Waller joined student government, but wanted to find new outlets to effect change. “They wanted me to socialize more. I was a pretty introverted person,” he said. “They tried to make me an active participant in school activities rather than letting me sulk around.”

His mentors suggested that he join a college preparatory program, one that organized college tours and SAT study sessions. “They helped me prepare for college in the first place,” he said. “I really don’t know how well I would have done if they hadn’t.”

Mr. Waller did well on the SAT and decided to attend Baruch College last fall in Manhattan, in part because it was more convenient than the other schools he considered. “The professors are really approachable,” he said. “I like the atmosphere. I like the fact that the buildings are relatively close to each other.” But getting to campus was difficult in his first few months of college, when he was recovering from surgery — the fifth operation on his foot — and was using a wheelchair. To make it to class on time, Mr. Waller left his home in Harlem at 6 a.m. to catch two buses.

Alianza Dominicana, a division of Catholic Charities Community Services, continues to be a resource as he adjusts to college. “They check up on me, make sure that I’m all right and that I’m getting to my classes,” Mr. Waller said.

In November, Catholic Charities of the Archdiocese of New York, one of the seven organizations supported by The New York Times Neediest Cases Fund, gave him MetroCards worth $210, and $300 in Visa gift cards to help him with his transportation and food expenses. “That way I don’t bleed myself dry trying to find something to eat here,” he said.

At the beginning of the semester, Mr. Waller and his mother had to pay about $300 to cover the costs of his books, and they purchased a walking boot and rented the wheelchair and crutches he used after his most recent operation. “Insurance only covers so much,” he said. Mr. Waller, who is covered by Medicaid, receives about $770 in Supplemental Security Income benefits each month. He expects to have another operation on his foot this year.

Ms. Medina said that despite her son’s hardships, “He’s making it work.” “He has his moments — we all do — but he hasn’t checked out and decided that he’s going to sit this out,” she said. “He’s participating in life and trying to make something of himself.” Mr. Waller is studying real estate, a field he chose with the hope that it would provide him with a path to financial stability.

“I just want to make money,” he said. “That way I don’t have to worry about whether or not I can pay the bills, or whether or not I can afford to feed myself.”

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Read the article on The New York Times