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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…

Football season is my favorite time of year. There’s nothing quite like the excitement of game day. I’ve been attending football games since I was a little girl. Back in the day, before my vision drastically worsened, I could see the ball and tell where the players were on the…

Watching your rare disease child fight battles you can’t always process hurts like hell. I knew my child had secondary adrenal insufficiency after he lost pituitary function following surgery to resect a brain tumor in October 2019. From 2020 to 2021, Hollis rarely got sick, and I remember only…