Six-year-old girl with rare, incurable disease just like any other kid

Maddie, 6, submitted image

Chelsea Wilson is an EMT, and a mother of four daughters: ages 16, 12, 6, and an 11-month-old.

It was because of her medical background that she knew to get help right away when a common respiratory virus turned into something much more severe and uncommon for one of her own children.

Maddie, now six-years-old, had RSV, a condition that the Centers for Disease and Control says causes cold-like symptoms.

“After that ran its course, she still just wasn’t recouping very well and she kept vomiting a lot, not eating, sleeping all the time, then one day just like a split second, her pupils dilated really, really huge all of a sudden and they were non-reactive to light, her gait became unsteady, she started stumbling all over the place,” Wilson recalled.

Wilson has been an EMT for 10 years, and knew right away her daughter was in danger.

“I didn’t know if she had a brain tumor, an aneurysm or something, but I knew it was definitely neurological and we had to go to the hospital fast,” she said.

Maddie was diagnosed with Guillain-Barre Syndrome first, and then a year later, with epilepsy and Autoimmune Autonomic Ganglionopathy.

“It’s an autoimmune disorder where her immune system attacks her body all the time, so its constantly attacking her body where her body can’t fight off anything and its done damage to her nerves, because it thinks its attacking a virus when it's actually attacking her nerves,” Wilson explained. “She has paralysis, her eyes are always constantly dilated, nausea, vomiting, numbness, tingling, migraines, she has seizures because of it, really bad seizures, the list goes on and on.”

Wilson said Maddie has had up to five seizures a day, and that Maddie will have to live with those medical conditions for her entire life.

“It just kind of came out of nowhere and it’s not going to go away, that is one thing that we know, is there’s no cure,” Wilson expressed. “We try to treat her symptoms, but right now that’s the best we can do is just treat what she has.”

That treatment involves going to Children’s Mercy Hospital in Kansas City every three weeks, and will soon be even further from home.

“She’s going to be sent to Houston or Wisconsin to see a pediatric specialist that specializes in AAG, they’re the only two in the country,” Wilson said.

As an EMT, Wilson said she’s used to being a professional around intense medical situations.

“It is different when it’s your own kid, it definitely puts things into perspective,” Wilson said.

Through it all though, it’s showing her friends and family just how important they are to her.

“It definitely brings your family closer together and it brings your friends close as well,” Wilson said. “We’ve had a really great support system. The community has been amazing, I can’t believe the way they’ve come together it’s been really, really nice.”

The Milan community is hosting a “Hope for Maddie” event, to help raise money for medical expenses.

It’s a free will-donation dinner with tons of fun events for families, including a photo booth, ring toss, face paint, prizes, a DJ, costumes, fire trucks, a dunk tank, and more. An auction will be held at 8 p.m.

The event is scheduled for Saturday, August 19 from 5 p.m. to 10 p.m. at the Milan Community Center.

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