STATESVILLE, NC (WBTV) - If Allie McDaniels looks familiar to you, you're probably remembering her from two weeks ago. There was lots of interest in this Statesville girl's story -- over 100,000 of you saw that post -- but much has happened to her since then.
As you might have read then, Allie lives with Ehlers Danlos. I said at the time that's a condition that means her joints dislocate easily.
I was simplifying. The reality is that bones which constantly dislocate create lots of other issues. Though I never mentioned it then, Allie recently had her spinal cord tear. Spinal fluid was leaking out of it.
If that sounds awful, her mom says it is. Allie was given glue and blood patches to repair the leak. Then a couple days before Christmas, the patch popped and had to be replaced.
Last week Allie was finally able to make it back to a full day of school… which was great!... but while she was there she blew the newest patch.
Since the patches aren't holding up, Allie's doctors decided they'll have to perform a spinal cord repair surgery. It's a particularly complex case, her mom Elizabeth said, because an extra pouch of nerves and fluid have grown on her spinal chord.
Elizabeth said they were told the surgery would either be done at Duke Medical Center or at Cedars-Sinai in Los Angeles. For sheer logistics, the family was hoping for Duke.
As doctors decided, Allie was sent home to stay on bed rest. Her mom says she was "in a lot of pain and having trouble walking and sitting up," but the hardest part was the waiting game.
Then three days ago, Thursday, Allie was taken to Levine Children's Hospital for pain control. It had just gotten too bad.
Then Friday, Allie was transported from Levine to Duke, where she received another blood and glue patch in her spinal cord leak.
"We know it's a temporary fix," Elizabeth said. "We're just hoping this one holds up until she can have the surgery."
Elizabeth paused, "And we just found out the surgery will be in Los Angeles. Doctors at Duke don't feel confident enough because they've apparently never seen a spinal cord leak the way hers is presenting itself."
She paused again. "But we'll tackle this like we tackle everything else. Positively. We just wish we were heading to Disneyland in California instead of a hospital!"
She laughed, then got real.
"It's frustrating," Elizabeth said. "But we did want to update you. We're keeping smiles on and heads up."
All about attitude.
Quite a crazy journey, Allie. And here you are, thumbs up. Keep hanging tough.
PS: Original post on Allie from January 11th >> http://bit.ly/2rMQGqj
**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.**