Johnson County boy inspires thousands with Facebook group

By Ashlyn Myers

The Statehousefile.com

It was November 2019, and Stephanie Smith noticed that her son, Charlie, wasn’t feeling well.

“He was just tired a lot and not eating well, and he had a fever off and on for two weeks,” Smith said. “So, I took him to the pediatrician, and they found a lump in his side.”

Charlie’s pediatrician ran scans and blood tests, but his parents grew tired of waiting on results and took him to the E.R. This was the moment they found out Charlie had cancer.

At 16 months old, Charlie was diagnosed with neuroblastoma. It is a very rare and aggressive cancer, with about 700 to 800 new cases each year in the U.S., according to the American Cancer Society.

Children are usually diagnosed at only 1 or 2 years old, with the disease becoming extremely rare in children past age 10.

Cheering for Charlie

Hearing that your child has cancer is something a parent never expects to face, but Charlie’s story is unique because of the support the Smiths received. Stephanie created the Facebook group Cheering for Charlie in 2019, hoping to use it to keep friends and family updated on her son’s health.

The group reached far more than just their personal friends and family, though. Over the years, it amassed more than 18,000 members, always showing up with prayers and well wishes. Group members fell in love with Charlie’s silly personality, commenting things like:

“I look at his videos every day!”

“Priceless! What a sweet little man!”

“Such a beautiful little boy. Praying for him to get well. He deserves a happy, healthy life.”

“Been praying daily for Charlie to have an easy journey. Praying for you to all have strength. God is by your side, holding you in his hands.”

Charlie’s heart also touched people across state lines, with people showing support from all over the country:

“Thoughts and prayers for you and your family from Iowa.”

“Praying from Kentucky!”

“Prayers for Charlie from Florida.”

“Prayers and hugs from Chicago!”

For Stephanie, the group meant more than just Facebook interactions.

“It went even further than just the comments and messages. It was friendships that blossomed from complete strangers. It was people showing up out of the woodwork to support us and love us,” Stephanie said.

Love from a distance

Charlie and his parents spent a long time in hospitals receiving treatment. Stephanie and her husband, Cody Smith, had to take alternating shifts at the hospital with their son. This made raising their other two children, Henry and George, all the more challenging.

“I definitely felt torn as a mom. I felt like I wanted to be there for Charlie, but I also had two kids at home that I needed to see,” Stephanie said.

“It was very difficult. You know, Cody would be at the hospital a lot with Charlie, especially after George was born, and I knew that I wanted to be there but I knew that I had a responsibility of taking care of George and Henry as well.”

Stephanie said Charlie and Henry were the best of friends, which made it hard for them to be apart as well. Whenever he wasn’t receiving treatment, they were creating crafts or playing together. Little George was much younger, but he and Charlie had a close relationship all the same.

Despite his situation, Stephanie said that her son always knew how to stay positive. Charlie spent ample time painting, coloring and cracking jokes just to get a laugh out of those around him. He also enjoyed going to Chick-fil-A, playing outside and eating his favorite snacks—especially chicken nuggets.

Looking up

After receiving months of treatment, in October 2021, the Smith family started to see light at the end of the tunnel. Doctors wanted Charlie and his family to fly out to New York’s Memorial Sloan Kettering Cancer Center and thought the remainder of Charlie’s cancer could be removed.

But upon arrival, the physicians found that Charlie’s cancer had spread across his body in a matter of days, eliminating their chances of removing it. Shortly after, doctors explained that they believed Charlie’s cancer was no longer curable, and it was decided that he would go into hospice.

This was devastating for the Smith family, but it also allowed them to finally be together—all five of them.

The family celebrated Christmas together on Dec. 1, 2021, wearing matching pajamas and playing with new toys gifted by group members.

Charlie’s health and energy continued to decline until Dec. 11, when he died in the comfort of his home, surrounded by those who loved him most.

Cody Smith shared the news of his passing to the group, saying, “This morning at 9 a.m., Charlie met the King of Glory. Mommy and Daddy held his sweet hands as he opened his eyes, looked toward heaven and breathed his last. A perfect moment frozen in time, filled with peace and love and comfort. Cancer has been defeated, and Charlie has finished his race. Praise God for his continued goodness and mercy!”

Moving forward

Stephanie and Cody were able to take time with their sons, grieving their loss as a family.

“It was so good to have time, just me and Cody and the boys at home, you know, figuring out how to grieve,” Stephanie said. ”The last two months have been really nice, just us at home.”

Cody returned back to work in February, and Stephanie is homeschooling Henry and George.

Many people didn’t get the chance to meet Charlie, but his resilience lives on.

“I always said I want to be like him when I get older because he really just … being his mom was just a privilege and an honor and a joy because he was just the perfect kid,” Stephanie said. “There’s no other way to describe him.”

Ashlyn Myers is a reporter for TheStatehouseFile.com, a news website powered by Franklin College journalism students.