This story was originally published in May 2022 and has been updated to reflect Valentina’s current age
In June 2018, Valentina was diagnosed with a pediatric low-grade glioma with a BRAF mutation. At the time, she was only one year old. Surgery was not an option, so her family had two choices for treatment—traditional chemotherapy or an experimental treatment suitable for her type of mutation.
Valentina’s family originally chose to try chemotherapy for her treatment; however, after three days of infusions, the port didn’t work because it was impossible to access. The only other treatment option was an experimental treatment.
While Valentina’s parents, Jocy and Marcelo, and her older brother Mauricio weren’t prepared for this news, they are grateful to have been able to turn to communities like the Pediatric Brain Tumor Foundation’s for resources and opportunities to connect with other families.
Nobody’s prepared for this challenge. Not emotionally, not financially, not in any sense. I think one of the things we are super grateful for is we had family, friends, community and organizations that were able to support us when we needed it the most. I know at the beginning of this it takes everybody by surprise.Marcelo, Valentina's Dad
Today, Valentina is a sweet seven-year-old who loves art, baking and swimming, just like her favorite princess Ariel. Like many other low-grade glioma patients, though, she faces the possibility of chronic relapses and significant challenges. Her brain tumor is currently steady, but she still must receive treatments to stop it from growing.
“A child with any kind of illness is a fighter. And it’s a fight that’s worth fighting alongside them,” says Valentina’s mom Jocy.
Because of the Pediatric Brain Tumor Foundation community, families like Valentina’s have hope. When you donate, fundraise, or volunteer with the Pediatric Brain Tumor Foundation, your support accelerates the development of safer ways to diagnose and treat pediatric brain tumors and provides families with the resources they need.
Ready to change kids’ lives? Check out our Get Involved section for ways you can make a difference today!
My brain tumor experience is something I think about every day of my life, but the outside world likes to erase that and pretend it didn’t happen. It’s too “taboo” or “uncomfortable.” So, this year, on the 7th anniversary of my surgery, I want to talk about it.
Combining her love for reading and desire to give back to help kids with brain tumors like her, Zoe created Books 4 Brains to raise money for pediatric brain cancer research. Join her upcoming Books 4 Brains read-a-thon and support the Pediatric Brain Tumor Foundation's research funding efforts.
As Nathan's dad, I am forever grateful to the Pediatric Brain Tumor Foundation community. And as one of the foundation’s internal research advisors and a scientist who works in drug development, I also see there’s so much more work we can do.
The Pediatric Brain Tumor Foundation (PBTF) is proud to welcome Dr. Sanjay Gupta, CNN’s chief medical correspondent, to the PBTF’s Board of Directors. Dr. Gupta will bring his wide-ranging experiences in medical practice and journalism, including as associate chief of the neurosurgery service at Grady Memorial Hospital in Atlanta, associate professor of neurosurgery at the Emory University School of Medicine, and chief medical correspondent for CNN, to bear as a valuable and expert advocate for pediatric brain tumor patients, survivors, and their families.
The Pediatric Brain Tumor Foundation is pleased to celebrate the FDA’s approval of Day One Biopharmaceuticals’ OJEMDA (tovorafenib), a new therapy for the treatment of pediatric low-grade glioma (pLGG), the most common brain tumor diagnosed in children. The FDA’s approval of OJEMDA represents a significant milestone for pLGG patients and their families. The new treatment also stands as a key breakthrough in the Pediatric Brain Tumor Foundation’s efforts to accelerate new treatment options for all children with brain tumors.
