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“Hyperphagia,” or the extreme drive to consume food, is a sizable word that is difficult for me to pronounce. It is a symptom of Prader-Willi syndrome (PWS), which my adult son, Robert, has. In people with PWS, the hypothalamus, a brain structure that regulates several bodily functions, including…

When Robert, my son with Prader-Willi syndrome (PWS), was small, any mention of group homes would cause my stomach to clench in fear. What would the future hold for our darling little boy? Group home living seemed limiting. We hoped our son would at least receive a college…

There are days, sometimes even weeks, when life as a caregiver for my 15-year-old son, Jake, feels almost normal. Our routines are established. His medications are working, and his therapies are consistent. Most importantly, he’s managing the symptoms of his two rare genetic disorders, Prader-Willi syndrome and neurofibromatosis…

A mother posted on Facebook recently that she’d let her son with Down syndrome choose between adapted and non-adapted activities in high school; it worked reasonably well, she said. We gave a similar choice to our son, who has Prader-Willi syndrome (PWS), 21 years ago. We all want…

I once wrote an essay called “The House of Questions.” In it, I shared questions my husband asks repeatedly, such as, “If you were me, which way would you drive home?” This might be hard for a spouse who didn’t have my superpower. After all, I raised a son with…

Preparing for my son Jake’s first year of high school stirs a complicated mix of pride, hope, and anxiety. Unlike most freshmen, he carries with him the weight — and the resilience — of navigating not one, but two genetic disorders: Prader-Willi syndrome and neurofibromatosis type 1. Every milestone…

Growing up in St. Paul, Minnesota, I was encircled by families with many children. We had action-packed fun and played games during summer vacation and after school. Our children, however, grew up differently. Early on, their neighborhood had no children, just older adults. Fortunately, my sister’s family moved next to…

The spiritual study program “A Course in Miracles” has interested me for years. Among other things, it encourages people to recognize the miracles in everyday situations. I’ve had some experience with such miracles. Thanks to new genetic testing methods, Prader-Willi syndrome can now be diagnosed right…

Thinking about potential independence for my 15-year-old son, Jake, who has Prader-Willi syndrome (PWS), brings mixed emotions. He faces unique challenges, but he also has unique opportunities. It’s natural to feel both pride and apprehension when your child expresses desire to do things on their own — especially if…

Scoliosis is common among people with Prader-Willi syndrome (PWS). I am active in the PWS community and have seen multiple people with the syndrome whose bodies were severely compromised by scoliosis, or an abnormal curvature of the spine. In my experience, older people with PWS and scoliosis often…