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…
Living Rare with Sarah NYC - a Column by Sarah Horta
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…
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…
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…