Charlie Karrat (Kuh-rot)
Charlie is a brave, funny, sweet little guy with Schaaf-Yang syndrome, and he inspires us every single day. He was born in June of 2014 and was the 14th person in the world to be diagnosed with this rare genetic condition. We like to joke that makes him part of a very exclusive club.
Charlie lives with challenges most people never have to think about, and he meets them with a calm strength that honestly puts the rest of us to shame. He’s our favorite little X-man.
A little about Charlie’s superpowers (and challenges)
Charlie’s condition affects his mobility, muscle tone, breathing, digestion, and sleep. His care is complex and very hands-on, and his days look different from most kids’.
He eats through a feeding tube, can’t talk or communicate the way most people do, and needs help with pretty much everything, right down to changing the programs on his iPad. He’s lifted and carried for transitions from couch to chair, chair to bed, bed to van. Despite all of this, Charlie almost never complains.
Seriously. We could all learn a lot from this kid.
(If you’re the type who likes details and medical specifics, we’ve got a deeper medical overview elsewhere. This page is about meeting Charlie, not his chart.)
Charlie loves:
- Mickey Mouse Clubhouse, Peppa Pig, and Hey Duggee
- Watching his sister Olivia dance and jump around
- The Five Little Monkeys song (especially the alligator 🐊)
- His Mickey Mouse doll (this is the only toy that truly matters)
Charlie doesn’t like:
- Pretty much anything in his mouth that isn’t his own fingers
Because of aspiration risk, Charlie can’t have food or drinks by mouth. But on his birthday every year, we put a little frosting on his lips so he at least gets a taste. Because everyone deserves birthday frosting.
Charlie depends on someone for everything, and that level of care is intense and nonstop. He’s been through more hospital visits, procedures, and physical challenges than most adults experience in a lifetime.
And yet…
He rarely cries.
He doesn’t get angry.
He just exists, calmly, taking it all in.
He’s not broken.
He’s not a tragedy.
He’s just Charlie.
Charlie is the heart of everything we do here. This site exists to:
- Share his story
- Build awareness
- Support his care
- Promote the books inspired by him
- Create a stable, accessible life where he can be safe and comfortable
If you landed here first, thank you for taking the time to meet him.
If you’d like to help support Charlie and his family, you can find more information on the Support Charlie page.
Either way, we’re really glad you’re here. 💛
Gallery
Snapshots of Charlie’s joyful moments and daily adventures.
