31/03/2026
What a truly beautiful and deeply heartbreaking article by Sheri. Thank you for finding the courage to share this and for bringing awareness to Prader-Willi Syndrome—and to the quiet, relentless battles that so many of us and our incredible Superstars face every single day.
Each struggle can feel overwhelming but somehow, through it all, the LOVE only grows deeper. It stretches us, shapes us and gives us the strength to keep going—so we can stand beside them, lift them up and support them in every challenge they decide to take on. ❤️
I hate Prader-Willi syndrome.
I don’t say that lightly. I don’t say it for effect. I say it because it has worked its way into every crevice of our life—quietly, persistently, relentlessly.
Sometimes it’s loud.
Sometimes it’s all-consuming.
And sometimes—just sometimes—we get a moment where we forget it’s there.
But it always comes back.
It has to. Because this is a disorder that wraps itself around one of the most basic human needs: food.
Food.
The thing that keeps us alive becomes the very thing that threatens my child’s life.
Our kids are plagued by it.
What they eat. How much they eat. When they eat.
Every bite is calculated. Every moment is monitored.
It may not look like a life-threatening allergy from the outside. It’s not immediate. It’s not dramatic in the way people understand danger.
But it is just as serious.
Because for someone with PWS, food isn’t just food. Sugar isn’t just sugar. It can hit like a drug—fast, powerful, and impossible to regulate. And alongside that comes something even harder to explain to people who haven’t lived it: an insatiable drive. A hunger that doesn’t turn off.
And so behaviors follow.
Hoarding. Sneaking. Stealing. Bingeing.
Eating things that aren’t even food.
Things that can hurt them. Things that can kill them.
It is intense.
It is exhausting.
And it is terrifying.
And then there’s the body.
The way it works against them.
A metabolism that doesn’t cooperate.
Low muscle tone that makes it harder to burn energy.
A system where things can spiral quickly if you’re not constantly paying attention.
It never fully leaves. It lingers. It waits.
Because food is essential to life.
And that’s what makes this disease feel so cruel.
You cannot remove the danger. You cannot avoid it completely. You have to face it—every single day.
And then there’s the world around us.
A world that celebrates everything with food.
Holidays. Birthdays. Rewards. Comfort.
Good days. Bad days. Every day.
So much of it centered around sugar. Around excess. Around “treats.”
Today it got me at adaptive soccer. Something that we love, but bribery often comes with children with disabilities.
“If you go play, we’ll stop at McDonalds.”
“If you finish that, you can get a large.”
Those phrases hit me like nails on a chalkboard.
Worse.
Because to us, food is not a reward system. It’s not a bargaining chip. It’s not something to be used to motivate or control behavior.
It’s something we have to protect our child from—even while giving it to her to survive.
And I know people will say, “My child will only eat certain foods.”
And I hear that. I do.
But we don’t have the option of leaning into that.
Our child doesn’t get the freedom to explore unhealthy habits.
Not because we’re strict.
Because we’re trying to give her a chance.
A chance at a healthier life.
A chance at building habits before her brain starts fighting against her.
A chance to delay or lessen the intensity of that insatiable hunger.
We are trying to build muscle.
To build structure.
To build a foundation that might hold when things get harder.
Because they will get harder.
And so we plan.
We monitor.
We say no more than we ever imagined we would as parents.
We separate food.
We lock things up.
We think ten steps ahead, all day, every day.
Not because we want to.
Because we have to.
And I hate it.
I hate what it takes from her.
I hate what it demands from us.
I hate the constant vigilance.
I hate that something so ordinary for everyone else feels like survival for us.
But here’s what I don’t hate.
I don’t hate her resilience.
I don’t hate the way she still finds joy in a world that doesn’t make this easy.
I don’t hate the strength our family has built in the middle of something we never asked for.
Because even in all of this—
in the planning, the protecting, the constant awareness—
there is love.
Fierce, unwavering, relentless love.
The kind that shows up every day and does the hard things.
The kind that says no when it would be easier to say yes.
The kind that fights for a future that feels uncertain.
I hate Prader-Willi syndrome.
But I will never stop fighting for the child who lives with it.
🧡
I wrote this like a journal entry, at the soccer field.
🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡
This is written by Moon & Mountains
Feel free to share, but do not remove my name.
These are words from my heart.
