How we celebrate birthdays with Prader-Willi syndrome

August is a busy month for my family. Both of my kids have birthdays this month, one day apart. My daughter, Emerson, is turning 4, and my son, Ellis, will be 1. This year, we’re celebrating them together with a Neverland-themed party. Birthdays and holidays are like my Super Bowl, so planning has been in full swing for nearly two months.

While birthdays are cause for celebration, they take careful planning for two kids with Prader-Willi syndrome (PWS) who are in two very different stages of life.

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When Emerson was a baby, my husband, Jamie, and I decided that first birthday parties would follow the theme of their nurseries. Her first birthday was “ONEderland,” building off the “Alice in Wonderland” touches in her room. For Ellis’ nursery, we chose the adjacently whimsical Neverland from “Peter Pan.” We landed on “Never grow up, little ONE” as the party theme, partly because it fits Neverland, and partly because I want them to stay little for as long as possible.

We’re hosting the party at a park this year and visited beforehand to picture the shelter setup and check the playground’s accessibility. As Emerson’s gotten older, the gap between her abilities and those of her friends has become more visible. She has a global developmental delay, common in PWS, and it factors into how we plan things like this. We look for accessible activities and play areas that work for her and that everyone can enjoy. Not all playgrounds are created equal. She’s not climbing ladders or monkey bars yet, so we look for ramps and secure railings.

We’re just as thoughtful about the games. In line with the theme, we’ll have a mermaid lagoon water table with mermaid toys, a low-to-the-ground “walk the plank,” a “feed Tick-Tock Croc” beanbag toss, and an adult-guided treasure hunt. All work for her, and all will be fun for every kiddo there.

Ellis will be happy to show off his sitting-up skills, munch on some chewies, and bask in the attention he’ll be showered with.

A menu for everyone

We’re also intentional about the food. Staying true to the theme, we’re serving forest mushroom caprese with mozzarella pearls and cherry tomatoes, “second star to the right” pasta rich with veggies and made with protein pasta, and a fruity Jolly Roger — a watermelon carved into a pirate ship and filled with fruit. All PWS-tailored recipes.

We’ll also have Mr. Smee’s cannon cake balls and sloppy Joe sandwiches for guests. Our kids can’t have those, and that’s becoming its own lesson. There will inevitably be situations where people around them eat foods they can’t have. We want to gently teach this in a controlled environment that doesn’t leave them feeling left out. We’re even thinking a day or two past the party, since pasta and natural sugars mean we need to stick with leaner meals afterward.

For cakes, I look for recipes with alternative ingredients: low sugar, fewer refined carbs, and protein if I can manage it. We haven’t seen intense hyperphagia symptoms in Emerson yet, but she’s entering the age range when they often start to appear. Being mindful of portions, we usually do a smash cupcake.

We’ve always erred on the side of caution with her diet, staying away from sweeter foods, hoping to curb a proclivity for sweet cravings. I’ve leaned into savory “cakes” for birthdays that are closer to a biscuit than a dessert, using cream cheese mixed with light whipped cream for frosting. She loves eating it and wearing most of it. I think it’s pretty tasty, too.

Ellis eats primarily through his gastrostomy tube, a result of the swallowing weakness that comes with his hypotonia. He’s doing great with purees and transitional foods like Greek yogurt, cottage cheese, and baby cereal, though liquids are still a struggle.

A smash cake isn’t within reach for him yet, and honestly, I’m grieving that a little. It’s not about the cake. It’s the milestone.

Then I remind myself: He’s running his own race. We’ll aim for that rite of passage on his second birthday.

This year, he gets a yogurt and puree “cake,” plain Greek yogurt shaped like a small cake and topped with colorful pureed fruit and vegetables. He’ll get just as messy and have just as much fun. That’s really all that matters.

Of course, please always consult your care team and dietitian on what’s right for your kiddo.

Birthdays look a little different for our kiddos. It’s a lot of planning and work. Fortunately, we’ve found real joy in making them our own: building out every detail around the theme; trying new, healthier recipes; getting creative with the games; celebrating our kiddos taking another trip around the sun.

So worth it.

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.