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…
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.
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…
