In his eight years, Naperville resident Charlie Sims has had to field a number of challenges.
“We started noticing changes in Charlie at age four. Those changes started with regression and developmental skills such as handwriting, speaking, sleeping. And then the biggest one that was the greatest red flag for us was his memory. When he started to show signs of childhood dementia,” said Leigh Sims, Charlie’s mom.
At the age of 6, he was diagnosed with Batten disease, a fatal, ultra-rare, progressive, neurodegenerative condition.
Charlie undergoes genetic treatments to combat Batten disease
The family has since been working with doctors at Rush Hospital, who’ve started Charlie on first-in-the-world genetic treatments.
”So, one of the investigational treatments that we have right now is a gene therapy that targets the brain. We inject it into the spinal fluid and, in hopes that it saturates the brain and replaces the gene that he has malfunctioning in his body.” said Kendall Robbins, the Neurogenetics and Translational Neuroscience Clinical Research Coordinator at Rush Hospital.
But his family says more attention and funding is needed to combat the disease, which is why they launched “Team Charlie” in October of 2023. Their goal is not just to raise awareness for Batten, but other rare pediatric diseases as well.
Charlie Sims and his mom, Leigh
The launch of “Walk with Charlie”
To that end, the group held its second annual “Walk with Charlie” on June 7 at Prairie Elementary School.
More than 300 people came out to the event, including Naperville Mayor Scott Wehrli, who issued a special proclamation to coincide with International Batten Awareness Day.
“Now, therefore I, Scott Wehrli, mayor of the City of Naperville, do hereby proclaim June 9 as Team Charlie and Batten Disease Awareness Day in the city of Naperville,” said Wehrli.
A state of Illinois House resolution for that day was issued at the event as well, presented by Donna Wandke on behalf of State Representative Janet Yang Rohr, who was unable to attend.
“And be it further resolved, that we commend Charlie Sims for advancing the scientific development of treatments for Batten disease for children everywhere. His family and friends, for valiantly facing the difficulties of Batten disease and the ongoing efforts of Team Charlie and their continued work of finding hope, giving love, and being good,” Wandke said.
Community comes out to walk and support Charlie, to fight against rare diseases
Those present at the event did their part with a mile-long walk around the neighborhood, helping to raise both funds and awareness in the fight against rare diseases.
“It just means so much, it’s overwhelming to see a community come together like this to support one of their own, to make sure no one gets left behind. And it’s hard to put into words just how grateful and impressed we are with the Naperville community,” said Charlie’s dad, Matt Sims.
It’s a community that’s united behind Charlie, who his family says has been a bright light through it all.
“He personifies hope not only from getting the treatment, but from who he is and how he never stopped smiling, never stops playing, never stops loving. And he is, motivation for all of us,” said Leigh.
Videographer: Mark Codo
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