Two pictures of a young girl with Prader-Willi Syndrome eating healthy meals on a cruise ship

Cruising with Grace

Contributed by Carrie Bell

PWS Travel Tale

When we first got Grace’s diagnosis, I remember thinking, “Well, I guess we’ll never be able to travel again. And we’ll DEFINITELY never cruise again.” Because let’s face it, cruises are synonymous with food.

How wrong I was! Last month our family of nine flew from Kansas City to Florida for Grace’s annual visit with Dr. Miller. The next day we drove to Orlando and set sail on 7-night Caribbean cruise. It was the perfect vacation!

I was initially very nervous about the over abundance of food on the ship but all my worry was for nothing. There was such a great variety of healthy foods throughout the ship. No matter which venue we dined at, there were plenty of PWS-friendly options for Grace. She absolutely loved the wide variety of fresh seafood available and enjoyed trying several new things I never would have thought to make for her at home.

When my husband and I wanted to have a less than PWS-friendly meal, we either waited until she was back in the room napping (we have 6 older kids so having someone available to stay with her was not a problem), or we would take Grace and some of her siblings to the kid’s club. She loved going to the kids club the most of all our kids!

They have hands-on, fully supervised activities as well as plenty of time for “free-play”. But the best part is, NO food or drinks other than water is ever allowed in the kid’s club. (The only exception was when they would serve a movie snack if you stayed for the after-hours program, but that didn’t start until well past Grace’s bedtime so we never worried about it).

The peace of mind I felt dropping her off in the kid’s club, knowing she would be well cared for, and that there was no food anywhere in sight, was priceless.

On top of knowing she was safe at all times and the fact that she had amazing variety of healthy food choices available (that I didn’t have to prepare, or even spend a single minute planning out what she would eat, well, let’s just say I came home with a completely different mindset. Whereas I was once worried we’d never be able to go on a family cruise again, I now think of cruises as the PERFECT vacation for families with kids impacted by PWS. In fact, we’ve already booked our next one and we can’t wait!

PWS Travel Tips

We brought a small travel high chair with us. I had read several people say high chairs and booster seats were few and far between and that turned out to be true. I found one on Amazon that had storage under the seat so it doubled as a diaper bag and held her bibs and water cups.

Another product I was very happy to have in the cabin was a blackout cover for the crib. I found a generic one on Amazon for around $20 and it was money well spent. The cabins are very small and we have 7 kids, so there was a lot going on in the cabins at any given time. But with the blackout cover, Grace was able to sleep without any problem even in the middle of the day with the curtains open or the lights on in the evenings.

Lastly, one of my favorite travel products for kids who are a little older is the Hicapop inflatable booster seat for the car. It folds up very small when deflated and just takes a few breaths of air and inflates within seconds. For younger kids still needing a 5-point-harness seat, I love the Cosco Scenera for travel, because it only weighs 7lbs and is very easy to install on airplanes and in rental cars.

Share your PWS Travel Tales and Tips

Traveling with PWS can seem daunting, especially when families are first learning about the diagnosis. While adjustments often need to be made, and details considered through the lens of this genetic disorder, many families do travel with their loved one with PWS. To honor and celebrate these experiences and offer guidance and hope to families who may be apprehensive, we are looking for your travel tales and tips! Fill out the form below to share yours. 

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