Celebrating a milestone in life with Prader-Willi syndrome
Letting our teenage son fly alone took preparation and faith
Written by |
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 of all, reassurance that every step we’ve taken to foster his independence was worth it. This wasn’t just another flight — it was a milestone we were once told might never happen.
Jake lives with two rare genetic disorders: Prader-Willi syndrome (PWS) and neurofibromatosis. He also faces significant anxiety, a common experience for people with PWS. When he was born, conversations with medical professionals painted a picture of limitations — of what he might never achieve and a level of independence that seemed out of reach.
Yet here we are, celebrating his flight from Omaha, Nebraska, to Los Angeles with his sister, four days spent together, and his solo return journey home. He navigated the unpredictability of air travel, supported by careful preparation and detailed planning.
Make no mistake: This decision was not made lightly. He had wanted to do this for years. We discussed every possible scenario and how he might handle them. People with PWS thrive on routine and structure, and travel disrupts that foundation. We recognized that sending him on this journey meant preparing him not just for the logistics of flying, but also for managing the emotional and sensory challenges that come with it.
We practiced what to do if he felt confused, who to ask for help, and how to advocate for himself. We reminded him that flight attendants and airline staff are there to support him, encouraged him not to talk endlessly to the person next to him (he is, after all, a talker), reviewed which snacks he could have, and more. Most importantly, we trusted him — and the foundation of independent skills we’ve nurtured since he was young.
What thriving looks like
This column isn’t just about living with Prader-Willi syndrome — it’s about thriving with it. The distinction between those two narratives is profound, and it’s one that changes lives.
Living with PWS means managing myriad symptoms. It means recognizing that time can feel abstract, that motor skills may be slower, and that emotional regulation often requires external support and structure to be effective. These are real challenges families face every day.
But thriving with PWS means recognizing that our children are kind, good-natured, and often bring humor and insight to those around them, making them smile. It means celebrating small victories in self-management, because positive self-esteem is the foundation for emotional stability and growth. Most of all, it means believing that independence — in whatever form it takes — is not only possible, but essential to a fulfilling life.
When we lead with possibility, while still respecting their challenges, we create space for growth we may never have imagined.
Consistent family rules, routines, daily and weekly plans, and gradually increasing freedom help teenagers with PWS build structure on the path to greater independence while feeling secure. This isn’t permissiveness; it’s intentional scaffolding. It’s teaching skills in manageable steps, celebrating progress, and always keeping the next milestone in sight.
For us, that progress has taken shape in countless small steps: playing outside with neighbors without us by his side, learning to navigate the grocery store and self-checkout (which he now loves and excels at), managing money, attending after-school activities, going to his first homecoming dance without us, and so much more. Each experience fostered greater independence and, more importantly, confidence. Each success transformed his self-image from “the kid who can’t” to “the young man who can — with preparation.”
A beginning, not an ending
As I hugged him in the airport, I told him how proud I was. But beyond pride, I feel hope — hope that this won’t be the last milestone to surprise us, and that it’s just the start of more independence, more experiences, and greater quality of life ahead. While this journey isn’t always easy, I hope other families see their own children’s potential reflected here.
The medical professionals who delivered his diagnosis years ago weren’t wrong to prepare us for challenges. But they couldn’t have known who our son would become — determined, resilient, outgoing, and capable of far more than anyone predicted. This flight was his achievement, but also a reminder to all of us in the rare disease community: Our children are not defined by their diagnoses alone.
They are defined by what we believe they can achieve, by the independence we encourage, and by their own remarkable ability to show us what thriving truly looks like.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
Leave a comment
Fill in the required fields to post. Your email address will not be published.