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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…

While I was shopping with my grandson, he spotted a ball in the next aisle. Since we’d experienced incidents of balls thrown at other shoppers, I didn’t want a repeat. “No ball!” I said. That provoked a tantrum. Throwing himself on the floor, my grandson began to scream and cry.

I’m a woman of a certain age, and self-care was never mentioned in my younger years. Today, thankfully, there’s considerably more information about this important concept, and we women should take note. After all, we typically have two jobs: working outside the home and handling the bulk of a home’s…

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.”  …

We all have struggles in our lives, some more than others. As an older mother, wife, and grandma (known as “G-Honey”), I can’t believe the beautiful life I’ve been given. My younger years were filled with chaos. Both of my parents were alcoholics and many surrounding relatives used one substance…

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…