STATESVILLE, NC (WBTV) - Ehlers Danlos. Ever heard of it? Me neither. Allie McDaniels, 13, lives in Statesville with her new service dog Kolbie, and deals with it every day.
Her mom gave this analogy to describe how Allie's body works:
"Think of your collagen as glue keeping your body and joints together. Like a pair of tight jeans that holds everything in. Ehlers Danlos waters that glue down and makes it weak. So if you have EDs, your collagen is more like yoga pants...your joints and body will just go where they may."
She then added a smiley face. I liked her humor. Using jeans and yoga pants to describe medical conditions.
"I'll be honest," Elizabeth McDaniels said. "My main reason for wanting to have her be part of #MollysKids is to help get the word out about Ehlers Danlos. No one knows about this genetic disorder. We always have to explain. I'd love to give it some attention and educate our community."
I did some research. Here are some easy facts:
- Ehlers Danlos is a life-long condition.
- Comes with lots of pain.
- You're often hospitalized.
- 60 percent of Allie's 2017 was spent in the hospital.
- It's a connective tissue disorder, easy to misunderstand.
- Many times parents are first accused of abuse.
- Allie's joints consistently dislocate.
- Fingers, wrists, knees, hips, shoulders, even her jaw.
- That can cause major difficulty in getting around.
- Allie can be walking, and her ankles and knees will dislocate.
- Or, vertebrae in her spine will start having issues.
- In those cases, she'll use a wheelchair.
- In a three day span Allie was hospitalized with 4 jaw dislocations.
"She is pretty much in constant pain," McDaniels said. "But she always has a smile. She is one of the strongest kids I know. No matter what she goes through, she always tries to make others happy."
Allie is in seventh grade at Northview IB PTO Middle School (an International Baccalaureate Program). Her favorite thing to do is shoot pool - she competes in a billiards league in Matthews. "And she's good at it," said her mom. "She's really good!"
Welcome, Allie. Think you just taught thousands of us something all new. Thank you.