Columns

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…

When you open a can of soda, you might not give much thought to the little aluminum tab you pull up. For most people, it’s just a piece of metal, tossed away without a second thought. But for our family — and especially for my son living with Prader-Willi…

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…

February has two different meanings for our family. On one hand, it’s the month of roses, chocolates, cards, and heart-shaped everything. On the other, it’s Rare Disease Awareness Month, culminating in Rare Disease Day on Feb. 28. It’s a time when families like ours, who are living with…

On Jan. 1, our 15-year-old son, Jake, walked off a plane from Los Angeles, having traveled entirely on his own for the first time. As he came through the gate with his backpack and a beaming smile, a wave of emotion washed over me — pride, relief, joy, and most…

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…

The Christmas season has always been my favorite time of year. I treasure memories of going to the homes of my grandparents and great-grandparents, large family gatherings, the big “box bash” on Christmas Eve, the smell of freshly baked treats, and anticipating the day I could move up to the…

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…