Molly’s Kids: Allie McDaniels has another csf leak (Ehlers-Danlos Syndrome)

Molly’s Kids: Allie McDaniels has another csf leak (Ehlers-Danlos Syndrome)
Allie McDaniels has another csf leak (Source: Family)

“I wish this was one of my encouraging emails, but this one is to let you know Allie has been having a difficult time.”

CHARLOTTE, N.C. (WBTV) - Cringe-worthy first sentence, especially when realizing the note was about Allie McDaniels, who we all love.

Anyone who follows our amazing #MollysKids probably knows Allie, from Statesville. She lives with Ehlers Danlos Syndrome. That's a lifelong condition that comes with constant pain.

Allie is often hospitalized with consistently dislocating joints. Fingers, wrists, knees, hips, shoulders, even her jaw... she can start walking and her ankles will just dislocate. Or, vertebrae in her spine will start having issues. It’s a connective tissue disorder, and sometimes it can cause spontaneous Cerebral Spinal Fluid leaks.

Every time she has a csf leak, she has to get it "patched."

It’s a weird thing to say. It really is. That Allie has to "patch" her spine. Sounds like, her mother jokes, she has a tire with a hole in it.

Only, it's not a tire. It's her spine. Fluid leaking into it is dangerous and patches are necessary.

The “patch” is done by pulling blood from Allie, then taking it and with some fibrin glue, doing multiple spinal taps to administer the concoction into her spinal cord. Her next date to fix her latest leak is set for September 10.

“Allie was able to start her first two weeks at South Iredell High Schools IB program,” her mom Elizabeth wrote. “But she hasn’t been for two weeks due to pain. It is not fully understood why Allie gets these leaks. Not everyone with EDS has them -- in fact, most EDS patients don’t have leaks.”

Allie has had multiple patches done at Duke, but Allie kept popping them.

Again, no definitive answer as to why. Maybe just the faulty connective tissue.

On the good side, Elizabeth said Allie has been now going to Mission Hospital and they love it.

"Not only do they understand Allie, but a couple of her doctors actually have Ehlers Danlos Syndrome!!" she said. "They get the complications that come with it. Talk about feeling heard."

Allie -- hang in there. We care and we're listening. Let us know how the patching process goes next month.

Past Allie posts:

*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.

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