CHARLOTTE, NC (WBTV) - If there was breaking news for #MollysKids… this is it. Allie McDaniels has surgery tomorrow!
Just got approved.
Allie is a 7th-grader at Northview IB School in Statesville living with the little-known Ehlers Danlos Syndrome. This genetic disorder means Allie's joints just go where they want to go. They constantly dislocate. Fingers, wrists, knees, hips, shoulders, jaw… you name it. She can walk and her ankles and knees will suddenly dislocate. She spends 60 percent of her time in a hospital. Recently her vertebrae also started having issues and her spinal cord began to leak.
We talked last month about that leak… at that point Allie and her mom Elizabeth were at Duke Medical Center desperately trying procedures to fix it. None worked. Doctors told her she needed a complicated and specialized surgery out at Cedar Sinai Hospital in Los Angeles. Allie has been waiting and waiting and waiting to get approved for that surgery. The approval just came through today!
Her mom emailed – they're already in LA. Tomorrow morning, doctors will remove a pouch on Allie's spinal cord. They'll also clip the area – using titanium clips similar to what's used for aneurisms. Doctors might also remove a piece of muscle from somewhere else in her 13-year-old body to put around the spinal cord.
This is a last resort.
"We are hopeful this will make a big change in her daily pain in her back," Elizabeth said. "They believe she has been leaking for seven years and has been untreated for so long that it has brought her to this current place of debilitating pain."
Just this morning we met Jacob Waite, the newest one of our #MollysKids. He is friends with Allie. I'd mentioned Allie in his post this morning. Weird coincidence, Elizabeth said, that hours after reading that article and seeing Allie mentioned, they suddenly got a big update.
"Be thinking of us, if you can," Elizabeth wrote. "We are hopeful this can be life changing for our daughter."
Done, and for sure. Let us know.
**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.**