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.

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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…

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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…