Connecting with PBTF Made a Huge Difference for Louis’ Family

When Louis’ parents noticed their energetic five-year-old walking and running with a slightly different gait in late summer 2023, they grew concerned. On September 5 of that year, they received news no parent wants to hear—Louis had a low-grade glioma in his cerebellum.

“Nothing can prepare you for that moment,” says Louis’ dad, Adam. “Your life and your child’s life change in an instant. The experience is profoundly scary. But we learned we weren’t alone. So many people stepped in to help and support our family.”

After several months of monitoring, Louis underwent surgery to successfully remove his tumor in July 2024. Today, at six years old, he is a thriving first grader with a passion for sports, reading, camping, building Legos and watching Formula One – among many other activities. “He didn’t let his diagnosis diminish his love for life,” says Adam.  “We drew strength from Louis. He’s been a model of resilience and grace since day one.”

However, Adam acknowledges that facing the fear, uncertainty, and all the added responsibilities that accompany such a diagnosis was overwhelming. “Getting your child the treatment they need while understanding the diagnosis, updating family and friends, and keeping up with the basic requirements of life – it’s an unprecedented and immense challenge.”

“But we are stronger now than when we started,” he says. “And now it’s our aim is to help others the way others stepped up to help us.”

His first advice to newly diagnosed families: “Get in touch with the Pediatric Brain Tumor Foundation as soon as possible. While support from family and friends is important, they’re often just as bewildered and scared as you are. Having a knowledgeable organization like PBTF in your corner makes a huge difference. They are there for you when you need it – and even when you don’t realize you need it.”

Adam goes on to say, “My conversations with Jenn Kelley (PBTF’s Family Support Manger) felt like talking to an old friend – one with an encyclopedic knowledge of pediatric brain tumors. The breadth of PBTF’s programming is amazing. They offer group and one-on-one support, financial aid, educational videos for kids, and they even get the little things right: Louis received a birthday card from another child who’d been through brain-tumor surgery a few years ago.”

Looking ahead, Louis’ parents are focused on appreciating every beautiful moment life has to offer. “We’ll keep living fully and supporting others just as we’ve been supported,” says Adam. “And we encourage others to join us in advancing research, volunteering, advocating, and donating.”

To families just beginning this journey, he offers one final piece of guidance: “Take a breath. Focus on what truly matters. And know you don’t have to do this alone.”

If you or a family you know has received a pediatric brain tumor diagnosis and is in need of support – whether emotional, financial, or medical – the Pediatric Brain Tumor Foundation is here to help. Visit  https://curethekids.org/resource/support-for-families/ to access a wealth of information and community support for every phase of a family’s experience – from diagnosis through treatment and beyond. You can also reach out to our Patient Family Advocacy team by completing this brief form or emailing [email protected] any time.