Christmas cheer for Camryn

Pictured, from left, Lindsay, Adam, Camryn and Camryn’s brother Cayle Coughlin visit Santa Claus at the conclusion of Sunday’s parade. (James “Tal” Moss photo)

As the carolers approached, tears welled up in the eyes of Lindsay Coughlin while her husband, Adam, wiped tears from his own eyes.

That was the scene Sunday afternoon as hundreds of community members gathered to surprise the Coughlin family with a special holiday parade.  

“It was emotional,” Adam said of the event. “I had no idea. I know that the folks who organized it went to great lengths to keep it a secret from us and they definitely succeeded.” 

The parade was primarily for Adam and Lindsay’s son, Camryn. 

Late last year, the 8-year-old was diagnosed with adrenoleukodystrophy, a rare genetic disorder that destroys the protective sheath surrounding the nerve cells that allow people to think and to control their muscles.

There is no known cure for the disease, but the family was able to get a bone marrow transplant from Adam to attempt to stop the progression of the disease.

The type of transplant Camryn received was risky, but the Coughlins were part of a clinical trial that made it safer.

Even so, about two months ago the family learned the transplant was unsuccessful. 

“Unfortunately, it didn’t get to where it needs to go fast enough and the disease is still progressing,” Adam said. 

Camryn is now on palliative care. A typical timetable for the fatal disease’s progression is 2-5 years. 

So, to help lift the Coughlin family’s spirits, local first responders, friends, teachers and more threw a surprise parade. 

The idea originated with members of the Monarch Fire Department, where Adam works, and the Wiemerslage  family. The Wiemerslages endured some trying times of their own through young Elsa Wiemerslage’s fight against acute myeloid leukemia.

The idea was presented to Ryan Weber, director of the Monroe County Emergency Management Agency. 

“I just helped make their ideas happen,” Weber said. “It was their idea to have all this go on, and they just needed help getting local contacts to make it all go off.”

Weber organized the parade, which included multiple local law enforcement officers, two area ambulance services, eight fire departments, the Waterloo Santa Float, a Clydesdale from JFP Equine in Waterloo, a Red Bud Regional Hospital float and even an ARCH Air Medical Services helicopter.

Multiple fire departments also collected toys from their districts that they then donated to the Coughlin family. 

“It’s what we do. We stick together,” Weber said as to why they put on the parade. 

Waterloo Fire Department Police Chief Aaron Shive expressed similar thoughts on why his department joined in the parade. 

“They’re part of the community, and Adam is a member of the Waterloo Fire Department,” he said. “We would probably do it for anybody.”

The parade began with around 100 carolers, made up primarily of teachers and families from the Waterloo school district, walking from Gardner Elementary to the Coughlins’ house. 

Once they finished singing, each of the vehicles that were part of the parade drove through the cul-de-sac right in front of the family’s driveway. 

At the end of the parade, after a Monarch Fire Department Santa Claus float dropped off the gifts, Adam addressed the crowd. 

“This is overwhelming,” he said, the words catching in his throat. “We love you all.”

The parade is another entry in a long list of community events supporting the family. 

That includes a “Light it Up for Camryn” Christmas lights display, two bone marrow donor drives, an axe throwing competition, a 5K put on by Zahnow Elementary and a Make-A-Wish gift reveal. 

“The amount of community support and involvement to help us and make things brighter for him have really left me speechless,” Adam said. “I’m just at a loss for words. We’re just blessed to live in a community like this.”

Going forward, Adam said the plan  for Camryn is simple. 

“Right now it’s just keeping him comfortable as the disease progresses,” he explained. “Palliative care is just the first step before we move on to hospice. He’s not on hospice right now, but the disease is going to progress and there’s nothing we can do to stop it.

“So it’s just a matter of treating symptoms as they come up and keeping him as comfortable and as happy as possible. And to love him and give him lots of hugs and kisses and soak in every moment we have with him.”

For those who would like to help the Coughlin family, House of Neighborly Service is accepting donations at P.O. Box 367, Waterloo, Ill., 62298. 

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James Moss

James is an alumni of Southern Illinois University Edwardsville where he graduated summa cum laude with degrees in mass communications and applied communications studies. While in school, he interned at two newspapers and worked at a local grocery store to pay for his education. When not working for the Republic-Times, he enjoys watching movies, reading, playing video games and spending time with his friends.
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