LINCOLN COUNTY, NC (WBTV) - 12-year-old Serenidy Bush is the 6th child in our area that we know of who was diagnosed with the supposedly “rare” Ehlers Danlos Syndrome.
“And for her, it’s not just Ehlers Danlos,” mom Whitney said, from their home in Lincoln County. “Serenidy lives with POTS, simple and complex partial seizure disorder, asthma, depression and anxiety. But the Ehlers Danlos causes the most issues because no one knows what it is.”
Every parent of each child who has previously written me about Ehlers Danlos (Hey Allie! Hey Hannah! Hey Zach! Hey Haley! Hey Andrew!) has said the same thing:
No one knows what it is and doctors often misdiagnose.
Whitney says Serenidy’s symptoms started when she had a seizure at the age of one. It wasn’t until she turned seven that doctors finally named what was going on.
Ehlers Danlos is a hard thing to describe. In a past post, I said to think of your collagen as glue that keeps your body and joints together... kinda like a pair of tight jeans that holds it all in.
Ehlers Danlos waters down that glue and makes it weak. So those who live with Ehlers Danlos has collagen that acts more like yoga pants… where their joints and body will go where they may. Lots of dislocations.
“Even most doctors aren’t aware of EDS until I explain it to them,” Whitney said. “To be honest, as a mother, it makes me furious.”
Whitney said she and her husband, George, often feel like Serenidy ends up lost in a world where she gets pacified. Even by professionals.
“Sometimes it’s as if we’ll hear, ‘Oh, that’s just an Ehlers thing’… when who really knows if it is or not?,” said Whitney. “Our daughter has gotten pretty good at looking and acting normal to everyone and most people will then look at us like we’re crazy when we talk about how sick she feels almost daily.”
A medical diagnosis does not define a child – and the best part about Serenidy is she’s trying really hard to not let hers define her. She loves dance class, singing, art classes and doodling. She’s in the 6th grade at Banoak Elementary PTO School in Vale, and her mom says she tries hard to enjoy the good days.
“It's a never-ending battle between nausea, pain and fatigue, but she’s doing it,” Whitney said. “My girl always gives it her best. I’m proud of her.”
Welcome to #MollysKids, Serenidy. Thank you for continuing to educate us on Ehlers Danlos. Let me know if you or your mom want to connect with parents of the other #MollysKids going through the same thing. I'd be happy to network you guys together on email.
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.