Choosing Happiness - a Column by Janet Favorite

When our son, Robert, was born in 1989, we never dreamed we would still be advocating for him at age 37. I was sure I could fix whatever problems he had. I thought he would eventually have a normal life. Low muscle tone was a problem from the start. At…

Note: This column describes the author’s own thoughts about Vykat XR (diazoxide choline). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Anyone who has enjoyed a meal with someone with Prader-Willi syndrome (PWS) has likely noticed their obsession with…

The holidays can add an extra layer of stress to life with Prader-Willi syndrome. Routines and consistency are important, as they can help to reduce anxiety and prevent meltdowns. But during the holidays, routines change, and many of us gather with friends and relatives. The children or young adults…

Few things scare a parent more than the possibility of their child becoming mentally ill. If there is a history of mental illness in the family, an observant parent will be worried and watchful for signs. When our son, Robert, was born with Prader-Willi syndrome 35 years ago, we…

It has been 37 years since our son, Robert, was born with Prader-Willi syndrome. During his time in the neonatal intensive care unit, my husband, Carey, was a devoted father. He organized care for our 6-year-old daughter, visited the hospital regularly, and supported me following a difficult birth. It…

On Sept. 16, 18 adults with Prader-Willi syndrome (PWS) arrived at Camp Knutson, including my adult son, Robert. The camp is located in Crosslake, Minnesota, between Big Trout Lake and Lower Whitefish Lake. Tall pines surround the rolling meadows, and the scent of the trees isn’t easily forgotten. Several…

“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…

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…