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There is so much more to my life than Bardet-Biedl syndrome (BBS), blindness, and obsessive-compulsive disorder (OCD). Despite these challenges, I live life to the fullest and do not let my diagnoses define me. When I meet someone new, I want them to get to know me for who…

Sometimes your day can start completely normally and change in a matter of hours. Oct. 6 started like any other school day, except my 11-year-old son Hollis was especially excited to go back. He had missed school the day before for a neurology appointment, where we discussed his back and…

Growing up with Bardet-Biedl syndrome, I needed accommodations, extra support, and sometimes a little more patience than other students required. But when I look back on my school years, what stands out most are not the tools I used or the things that were difficult. What stands out most…

For years, one of my biggest goals for my son Hollis was simple: I wanted him to be able to go to school and be a kid. Navigating a rare brain tumor, its treatment, and the resulting complications, including acquired hypothalamic obesity, has meant his education has never…

Before I knew or understood anything about Bardet-Biedl syndrome (BBS), I was just a little girl living life. I was born with 12 fingers and 12 toes, enlarged kidneys, and high blood pressure. As a toddler, I began expressing that I couldn’t see in the dark and showing some…

Although my son Hollis’ brain tumor, a craniopharyngioma, was not cancerous, we have walked alongside the childhood cancer and brain tumor communities through treatment, survivorship, long-term complications, fear, advocacy, and hope. The diagnoses may differ, but many parts of the journey are shared. That is why we show up and…

Attending Oklahoma State University (OSU) had been a dream of mine for as long as I can remember. I didn’t want to go anywhere else. So when I finally moved into the dorms at Stillwater in August 2013, it was a dream come true. I was on my own for…

When my 11-year-old son, Hollis, was diagnosed with a rare brain tumor in October 2019, I entered a world I knew absolutely nothing about. No one in my family had ever lived through something like this before. None of my friends had lived it. I didn’t have someone in my…

Technology plays a huge role in my independence as someone who is mostly blind. My iPhone is one of the accessibility tools I rely on every day. The examples of how I use my phone as an accessibility tool are endless. I use it to tell the time, keep track…

September carries a lot of meaning for my family. While everyone looks forward to taking pictures and sending their children off for the first day of school, my son Hollis’ journey has been filled with bittersweet moments. Hollis began pre-K in 2019 at 4 years old. In October of that…