Photo collage of individuals with Prader-Willi syndrome doing various activities like horseback riding, hockey, swimming, saxophone

No Limits

When we receive a diagnosis of Prader-Willi syndrome, often we also receive a litany of “cannots” and “will nevers”. We may let ourselves dwell, even if momentarily, in that world of negatives and adventures never-to-be. We mourn the future we thought we once possessed, thought our loved one possessed. Some would argue it is part of the process, to say goodbye to those potential futures and let the pain of grief sharpen our edges and restructure our cells for cortisol spikes and battle-ready alertness, preparing us for a future of challenges and disappointments.

But the hopeful reality is that no future is ever decided, genetics intact or not. A diagnosis of PWS is merely a template our loved one’s lives are laid upon, not a road map etched into stone. With advances in research, potential treatment options, our understanding of how to manage food access and behavior, and the growing education of our communities, the lives of our loved ones look more promising by the hour. With the awareness and interaction capabilities social media affords us, we can see how varied and beautiful the lives of individuals with PWS are and can be. This alone should give parents and caregivers hope.

We reached out to our community, asking what activities your loved ones enjoy. In a world where so many of us are told what our children won’t be doing, let’s blow those speakers, dismantle those labeled barriers, and celebrate all the wonderful things they ARE doing!

Here are just some of the responses from our question, “What activities does your loved one with PWS enjoy doing?”

“Going to the park and down the slide. Loves playing and chasing our dog, Maya.”

“Playing soccer.”

Coursework needed to apply for graduate school occupational therapy program.”

“Playing the guitar.”

“Archery club and getting the occasional bulls eye!”

“Swimming and gymnastics.”


“Playing doctor with her Build-a-Bears! She does oxygen and growth hormone shots on them too.”


“Walking in woods, swimming, digging in sand, climbing anything.”

“Singing with the choir.”

“Playing ice hockey!”

“Dancing and walking.”

“Camping! She is only 2 but she loves to be at the campground!”

“Everything music related.”

“Theatre school.”

“Puzzles and coloring apps and word games on her iPad.”

“Nature walks.”

“Jigsaw, colouring, ballet, and tap dance.”

“Walking her dog.”

“Cycling, swimming, puzzles, sticker by numbers,”

“Walking and volunteering at the horse rescue.”

“Anything with animals.”

“Scary Movies.”

This is a small list of all the many exciting and fulfilling activities individuals with PWS participate in. Whether you are a new parent, or a veteran caregiver, remember there is no limit to the joy our loved ones may find in life. 

“The quality of our life is directly proportional to the quality of our thoughts.” –  Avijeet Das

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