Living Rare with Sarah NYC
— Sarah Horta

Sarah is a mom of five from New York City, a home health aide, and a patient advocate. Her son, Hollis, is diagnosed with acquired hypothalamic obesity, panhypopituitarism, adrenal insufficiency, epilepsy, and other lifelong, complex medical needs caused by a rare, childhood brain tumor and treatment. Sarah shares the realities of her family’s victories, setbacks, fears, and hope that come with raising a medically complex child; she believes if their story helps one family feel less alone or inspires change, every word is worthwhile.

Columns

When raising a medically complex child, life can change in an instant

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…

Columns

How advocating for my son led him to a specialized nonpublic school

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…

Columns

Why we walk alongside our brain tumor community every year

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…

Columns

I was lost and searching for answers. What I found was a new family.

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…

Columns

The journey to my son’s first day of 6th grade has been bittersweet

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…

Columns

When everything changed, and our normal life went away

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…

Columns

‘Rare’ is a four-letter word that affects the entire family

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…

Columns

Holding on to hope when setbacks abound for a medically complex child

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…

Columns

Invisible injuries, not bad eating habits, caused my son’s aHO

Looking back, I realize that my son Hollis’ acquired hypothalamic obesity (aHO) didn’t begin with weight gain. The signs had been there for years, I just didn’t know what I was seeing. In October 2019, Hollis underwent brain surgery to remove a craniopharyngioma, a rare type of noncancerous…

Columns

What people don’t understand about my son’s hypothalamic obesity

When people look at my son, Hollis, they often notice his weight before anything else. What they don’t see is the permanent damage left by his craniopharyngioma, a type of brain tumor. They don’t know that he’s undergone brain surgery and radiation treatments, or that he takes medications daily…