Finding Joy in the Journey - a Column by Paige Rivard

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…

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…

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…

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…

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…

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…

School is out, and thoughts of summer travel and making family memories are here! Our family has always enjoyed traveling, which is reflected in one of our favorite quotes attributed to St. Augustine: ​​”The world is a book, and those who do not travel read only one page.”  …

People often ask me, “How did you become such a strong advocate?” Many times, I’ll begin my story with the birth of our son, but it really started when I was 24. A year after my husband and I were married, when we were excited for the future we would…