Holding on to hope when setbacks abound for a medically complex child
We were excited to begin treatment for aHO, but then new issues emerged
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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 years of watching his body change because of damage to a brain area called the hypothalamus, due to a craniopharyngioma — a rare type of noncancerous brain tumor — we finally had access to a medication called Imcivree (setmelanotide). I knew it wasn’t a cure, but I hoped it could help slow the weight gain, ease his hunger, and give his body some relief.
Because of Hollis’ medical complexity and multiple comorbidities, his care team at Children’s Hospital of New York (CHONY) advocated for him to receive Imcivree through compassionate use before it was approved as a treatment for aHO by the U.S. Food and Drug Administration (FDA). Although that request was denied, everything changed when the FDA approved it for aHO last March.
With Rhythm Pharmaceuticals supplying the medication and Hollis’ CHONY care team moving quickly to begin therapy, he became the first patient in New York to start treatment for aHO on April 9, 2026.
Our family’s journey has also been supported by PANTHERx Rare Pharmacy, whose staff coordinate his medication, answer questions, provide education, and remind us that we’re not facing this rare disease alone.
Three months into the treatment, hope is still here, but so is reality.
The scale continues to climb
Every time Hollis steps onto a scale, I brace myself. Watching the number go up is heartbreaking. I know aHO isn’t caused by poor choices or a lack of effort, but that doesn’t dissipate the fear.
On June 18, Hollis had a seizure at school that left him unconscious. Afterward, he wasn’t himself. He developed headaches, pressure in his head, lower body pain, and eventually vomiting. I stayed in close contact with his neurologist because something just didn’t feel right. At the time, I didn’t think those symptoms meant there was new tumor growth. When your child has so many medical conditions, it’s difficult to know whether a symptom belongs to something you’ve already learned to manage or whether it’s the beginning of something entirely new.
A little over a week later, Hollis was excited to attend Hole in the Wall Gang Camp, where children with serious illnesses can simply enjoy being kids. Our hope was short-lived. Less than 24 hours after arriving, he had to return home because he wasn’t doing well mentally, leaving his three older sisters and brother to finish camp without him. Watching him leave so soon was heartbreaking.
Then came his gastroenterology appointment on July 9. As we reviewed his progress, we saw that despite three months of treatment, the scale had continued to climb. Looking back, that appointment changed everything. For the first time, the weight gain, headaches, pressure in his head, vomiting, body pain, and seizure no longer felt like separate events.
That weekend, I contacted Hollis’ oncologist. Although he already had a routine MRI scheduled for July 14, his oncologist didn’t want us to wait. We were sent to the emergency department on July 13 for an urgent MRI, which showed that a lesion first seen in his January MRI had grown.
In an instant, our focus shifted again.
Instead of asking whether the treatment for aHO was working, we were once again searching for answers about his brain. As I write this, we’re still waiting to understand what that growth means.
A brain MRI of Sarah Horta’s son Hollis shows the growth of a lesion that had previously been identified, requiring further evaluation. (Courtesy of Sarah Horta)
Living with a medically complex child has taught me that there is no such thing as focusing on one diagnosis at a time. While one specialist manages aHO, another treats seizures, another monitors his brain, and another replaces the hormones his body can no longer produce on its own. As his mom, I don’t have the luxury of separating those diagnoses. I carry them all.
Some days, I feel encouraged because Hollis finally has access to a treatment. Other days, I feel defeated because we fought so hard to get here, and the scale is still moving in the wrong direction while new medical concerns continue to emerge.
Still, we will keep showing up, asking questions, trusting Hollis’ care team, and holding on to hope — even when it looks different than we’d imagined.
Behind every number on the scale is a child who has already survived brain surgery, radiation, lifelong hormone deficiencies, seizures, chronic pain, and now another season of uncertainty.
Hollis is more than his weight. He is more than his medical conditions. He is a person who deserves the chance to enjoy childhood while continuing to dream about his future.
Note: Rare Obesity News is strictly a news and information website about these disorders. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Obesity News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare obesity disorders.
