Edson Falls Ill with Wegner’s

Benton Dreasher

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Peculiar medical cases are often seen as abnormal. Such anomalies were presented when junior Maddie Edson fell ill in late September 2018. Although students may have heard about Edson’s ailment and extended absence, they may not know the extent of it.

Edson fell ill with Granulomatosis with Polyangiitis, which is more commonly known as Wegener’s. Wegener’s is an autoimmune disease that can cause inflammation to any of the blood vessels in the body, which can cause many complications, and in many cases can be a chronic condition. In the early stages of Edson’s battle with Wegener’s, there was some uncertainty about what exactly she was sick with, but was assumed to be pneumonia.

“It started when the doctors thought I just had a normal case of pneumonia so they sent me home with medicine,” Edson said.

The prospect of it ending there started to diminish when her condition worsened despite the medication prescribed.

“When it was getting worse over the next few days I went back and they took x-rays of my lungs,” Edson said. “After seeing the images they sent me straight to Wesley Children’s Hospital on Sept. 4. I was there for two weeks.”

During those two weeks, Edson went through rigorous diagnosis processes, which consisted of doctors at Wesley matching the symptoms she was showing to possible infectious diseases. During this time, the Edson family tried to remain optimistic.

“My entire family was a little bit nervous, because, of course, there was the possibility that it was something much worse than just pneumonia, which they (Wesley doctors) thought it was.” Maddie’s brother, junior Josh Edson said. “We just tried to stay positive.”

Despite ruling out many other infectious diseases, doctors were reluctant to diagnose Wegener’s because not many people Maddie’s age have fallen ill with it; Wegener’s most frequently appears in people between the age range of 40 to 60 years old. To confirm that it was Wegener’s, Maddie underwent a kidney biopsy.

“In Kansas City I stayed in the PICU (Pediatric Intensive Care Unit) for one week and then the nephrology unit for the rest of my time while they worked on getting my kidneys better,” Maddie said. “I barely remember the first few days and after that I do not remember anything until the last week I was there.”

Maddie’s mother never left her side, from the helicopter ride to Children’s Mercy, to all of the days Maddie spent in the hospital. Additionally, her dad, three sisters and brother would visit when they could.

“They [her family members] all took turns coming to sit with me,” Maddie said. “When they couldn’t be there, we would Facetime when I felt like it.”

Although Maddie was in hospitals for nearly months at a time, she said she does not remember much of her stays.

“I was very sick and they had me so medicated I don’t remember much,” Maddie said. “I know I was scared because they couldn’t figure out what was wrong and I was afraid I was going to die.”
At the time Maddie fell ill, she was halfway through her club soccer season, but does not plan on finishing due to loss of muscle from laying in a hospital bed for a month. Maddie is still unaware on if she will be able to play during the spring soccer season because she still needs to gain a significant amount of strength back.

“I am currently doing physical therapy several times a week to try and get some strength back. I first have to get to where I can jog, then run, then actually get strong enough to play,” Maddie said.
Maddie said the reintegration into school has proven itself challenging, in both catching up on school work, as well as learning all the information she had missed in her absence.

“It has been hard, but my teachers are helping me a lot,” Maddie said. “I missed a month of school so it sometimes feels overwhelming.”

Despite this road bump in Maddie’s life, she’s focused on getting back into a groove and reorienting her focus back to school.

“Other than taking medicine and going to physical therapy, my life is getting back to normal,” Maddie says “But one thing I do have to be careful about is I have to be careful to not touch a lot of things other people have and stuff like that. I go through a lot Germ-X.”

Despite her relatively quick recovery, all of the medical treatment and therapy that Maddie has been going through comes at a steep price.

A GoFundMe page was started in order to assist in funding Maddie’s treatment and recovery. As of November, crowdfunding has reached $8,316 in support of Maddie. Additionally, DECA made and sold “Team Maddie” t-shirts to provide further funding.

“I know a lot of people have helped out in so many different ways and I could not thank everyone enough,” Maddie said. “My family and I never would have thought this many people would reach out, but we are so grateful.”

In addition to Maddie, her family is thankful for the help that they are getting, including her brother Josh.

“I really think it’s a community coming together and helping someone in need,” Josh said. “Our entire family is very grateful.”