Living Rare with Sarah NYC - a Column by Sarah Horta

Watching my son Hollis struggle with severe lower back pain has been one of the hardest experiences I’ve faced as his mother. His pain continues to be one of his biggest struggles, along with weakness and difficulties involving his left leg. Some days, he rates his pain an 8 or…

On July 13, my son Hollis had a brain MRI that revealed something we weren’t expecting. Nearly seven years after his craniopharyngioma diagnosis, imaging identified a small enhancing focus in the left occipital region of his brain that had increased since a previous MRI in January. While his original…

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…

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…

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…

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…

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…

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…

My son Hollis is a medically complex child, but I’m also the mother of four other children. Hollis has three older sisters — Haylie, Hope, and Haven — and an older brother, Hector Jr. Together, we’ve all been beside him every step of the way medically, emotionally, and physically. Parenting…

Note: This column describes the author’s own experiences with Imcivree (setmelanotide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When my son Hollis began treatment for acquired hypothalamic obesity (aHO), our family felt hopeful. After two…