What people don’t understand about my son’s hypothalamic obesity
His weight gain resulted from brain damage, not 'poor parenting'
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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 to keep him alive. They don’t see the countless specialist appointments or the seizures, chronic pain, and adrenal insufficiency.
They just see a child living with obesity.
What many people don’t realize is that my son’s weight isn’t simply about calories or exercise. It’s the result of acquired hypothalamic obesity (aHO), a rare condition caused by damage to the hypothalamus, the part of the brain that helps regulate hunger, fullness, metabolism, temperature, hormones, and energy balance.
For our family, aHO changed everything.
Before his brain tumor, my son was an active little boy. After treatment, we slowly watched his body change in ways we couldn’t control. The weight came on quickly after the summer of 2024, despite our efforts to make healthy choices. Hollis was always hungry, no matter how much he ate, and trying to control a child’s appetite is hard when aHO leaves him constantly hungry.
His metabolism slowed dramatically after a seizure in July 2024 that lasted four minutes and turned him blue and left him unconscious. Every doctor’s appointment became another reminder that we were fighting something far more complicated than obesity.
What I wish people understood
One of the hardest parts of aHO isn’t the medical side; it’s navigating others’ judgment, which affects mood and emotional regulation.
Following the U.S. Food and Drug Administration’s approval, Hollis became the first patient in New York to begin Imcivree (setmelanotide) treatment for aHO after advocacy from his Columbia Children’s Hospital care team. (Courtesy of Sarah Horta)
People assume parents aren’t trying hard enough when they see a child with obesity. Strangers who aren’t familiar with these conditions offer diet advice or suggest more exercise without understanding the complexity of aHO. Hypothalamic obesity doesn’t respond to diet and exercise the way typical obesity does. In my son’s case, his weight gain and uncontrollable appetite are the result of hypothalamic damage. It can feel incredibly isolating to constantly defend your child’s condition when you’re already carrying the emotional weight of managing a complex medical life.
As a caregiver, I’ve learned that hypothalamic obesity affects far more than a child’s body. It affects self-esteem, mental health, social experiences, and everyday family life. It changes how you grocery shop, how you celebrate birthdays, and even how you plan vacations.
I won’t sugarcoat things and say that Hollis is doing great with these body changes. Even an 11-year-old child has a vision of what they expect to look like, and having a medical condition that affects the body can cause a lot of mental struggles.
He laughs. He dreams. He makes friends. He loves camp. He keeps showing up despite everything his body has endured. Some days he is full of fighting power; some days he isn’t.
Recently, Hollis began a new treatment, Imcivree (setmelanotide), which was specifically approved for aHO last March. Like many families, we’re hopeful, but we also understand that there are no easy answers. Progress isn’t always measured by the number on a scale. Sometimes it’s having a little more energy, feeling a little less hungry, or simply getting another chance to enjoy childhood.
That’s what I want people to understand. aHO is not a lack of willpower. It isn’t caused by poor parenting. It is a lifelong medical condition resulting from injury to one of the brain’s most important control centers.
If sharing our family’s journey helps even one parent feel less alone or encourages one person to replace judgment with compassion, then every difficult day has a purpose.
My son is so much more than his diagnosis. He is a brain tumor survivor, a fighter, and, above all, an incredible kid who deserves to be seen for who he is, not for what the scale says.
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.
