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Lafayette High student using disability to fuel change at a national level

1.5 from 2 votes
Friday, July 19, 2019

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A Youngsville 17-year-old with a rare bone disorder and a passion for politics is trying to make the world a better place for people with disabilities.

William Romero is certainly off to a good start. In March, he led a disability awareness forum at his school. Now, he's drafted a mock bill for a prestigious leadership program that would increase research funding for rare diseases like the one he has.

"Fibrous dysplasia has changed the way I view the world," Romero said. "It's this thing people say is wrong with me, but I don't consider it something wrong with me because it allows me to do things and speak out."

The disorder causes benign tumors that can weaken bones and cause deformities or fractures. Romero has undergone two surgeries in his teen years to fix fractures caused by the disorder.

It limits his ability to play sports, and it also affects the way he walks. Romero won't let it affect other aspects of his life though.

He leads a long list of organizations at Lafayette High School, where he's entering his senior year as student-body president. Last month, he was elected governor of Boys State, a prestigious summer leadership program put on by the American Legion.

On Friday, Romero leaves for Washington, D.C., to represent Louisiana in a mock senate at Boys Nation, where he's hoping to be elected president.

"I definitely want to run for president because I know I'd regret it if I didn't try," Romero said. "That was my mentality with running for governor. I didn't expect it, but I didn't want to leave it on the table."

Romero drafted a mock bill ahead of the leadership event that isn't so different from what the real lawmakers are working on.

A 2017 U.S. Senate resolution designated Feb. 28 as Rare Disease Day. Fibrous dysplasia was one of just 13 diseases mentioned in the resolution.

Romero's mock bill goes a step further than the real legislation, however. He doesn't want to just provide awareness of fibrous dysplasia and the related McCune-Albright Syndrome, but also increase funding that could lead to a cure.

The draft he's written for Boys Nation would increase funding of the Department of Defense Peer Reviewed Medical Research Program by $600 million through a tax of 5 percent on all online sports gambling winnings for three years. The money would be used to fund research of scientific merit, and excess funds would be appropriated to the Centers for Disease Control and Prevention, according to his mock bill.

"This is currently what the Fibrous Dysplasia Foundation is looking for in the federal government," Romero said.

Liam Doyle, disability awareness coordinator for Lafayette Consolidated Government, was stunned by Romero's maturity when he helped the teen put together a public disability forum at Lafayette High in March.

"He's unassumingly spectacular," Doyle said. "He's a quiet and reserved person, but once you get him engaged, he's sharp as a wit and tuned in to everything around him. I'm excited to see where he ends up."

Doyle, who has cerebral palsy, allowed Romero to shadow him at city hall between Boys State and Boys Nation.

"We both just happen to have disabilities," Doyle said. "But what bonded us more than anything was our desire to create a better world for ourselves and other people."

After graduating from high school, Romero plans to attend college — he's not sure which school yet — and eventually pursue a career in politics.

"I definitely want to pursue politics and run for public office at some point," he said. "I want to help people, and I'm interested in it. It wouldn't be work. I very much want to pursue becoming an elected official."

Source: the advocate
1.5 from 2 votes
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