I remember happily playing soccer, my dad remembers his son limping. A lot.

William Romero was just four years old when he was diagnosed with polyostotic fibrous dysplasia (FD). “As a child, I did not realize any of my symptoms other than the fact that I walked funny, but as I reached puberty, I started to feel more of the pain associated with FD.” But aches and pains are not what William identifies as the hardest part of living with FD; instead, he says it’s the “invisibility” of FD. “The hardest part continues to be the insensitive comments that I receive. I had my first surgery in seventh grade, which as you can imagine, is a time when kids are mean. As I struggled with my own setbacks and surgeries, some of my peers did not truly understand what I was going through and saw me as a burden or a fake, since my Fibrous Dysplasia is practically invisible other than my gait. My struggles have always centered around other people, which inspired me to get more involved in disability awareness.”

Growing up in Lafayette, Louisiana, William says he was lucky enough to be surrounded by a wonderful support system, rooted in his family, to help him through his toughest times. “My family is everything that I could ask for. I have one brother, named Parker, and he honestly just inspires me to continue to overcome my obstacles and be the best big brother than I can. Living with FD has definitely introduced some struggles to my family, but despite the difficulties, my family has always been there for me, and I would not be where I am without them. My mom and dad have always inspired me to push further and take on the world.” 

However, now in his first year at Vanderbilt University, William has had to make massive adjustments. Along with making modifications to navigate the pandemic, William has had to stop ignoring many of the obstacles of FD. “It is difficult sometimes because people often assume that I am capable of doing something more strenuous than I am comfortable with, and it always feels weird to tell them about a disease that they will just mispronounce and misunderstand. The weather here in Nashville is also much cooler than in Louisiana, and it is hard to be outside when it is cold because that is when I feel my leg the most. In my life, it has always been challenging for me to accept that I have limitations, and I feel like college has only made that harder. It is tough to properly convey the emotional weight of my disease to my peers because many of them find it difficult to relate to my struggles.”

These added challenges have made William even more determined to achieve his goals of disability awareness and advocacy. “I want to be able to help people through their own process of self-acceptance. It took me a long time to become proud of my disease, and I hope to be able to help other people come to that conclusion, especially other kids and young adults. But I think that I have been blessed with having Fibrous Dysplasia. Although it has not been easy, I would not change it for the world because it has allowed me to get involved in a wonderful community and taught me many difficult life lessons at a young age. Because of my disability, I have been able to become an advocate, host a panel on disability, and educate my peers about the struggles of the community.” 

And he’s a man with a very distinct plan after college. “I would like to work in non-profits before pursuing politics. I want to be a politician because I want to continue to improve disability policy and stand as a role model for our community.” And his ultimate aspiration? “In the end, I want to be President of the United States, but I know that there will be a lot of other callings and blessings before that.”

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