If you’d told me 15 years ago, when my son was diagnosed with Prader-Willi syndrome, that I’d one day be fluent in complex medical terminology, juggle multiple therapy schedules, and still find ways to laugh, I probably would’ve raised an eyebrow and reached for another cup of coffee. But…
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The past two weeks could be described as a master class in emotional whiplash — a wild ride that would leave even the most stoic parent reaching for the breath mints and tissues. Last month, I wrote about riding the emotional roller coaster of Prader-Willi syndrome (PWS), and…
“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…
Recent Posts
- Advocating for your child with Prader-Willi syndrome is a lifelong endeavor
- Collecting pop tabs is a small act that makes a big impact
- Safety concerns over PWS therapy ARD-101 pause global clinical trial
- Starting growth hormone before age 2 does not harm PWS sleep
- I’m hopeful a new treatment will benefit my son with Prader-Willi syndrome
- Palatin to test 2 obesity-targeting drugs for PWS in clinical trials this year
- Still-recruiting ARD-101 trial for PWS lowers US enrollment age to 7
- For rare disease families, February is a month of both love and awareness
- Muscle, bone signaling imbalances found in non-obese PWS children
- Most PWS patients meet nutrient targets but struggle with calorie control