Valentina: Living with Pediatric Low-Grade Glioma

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. Her journey is currently steady, but she has not crossed the finish line yet. Now, at five years old, she is still in treatment. 

Valentina’s parents, Jocy and Marcelo, along with her older brother Mauricio have been with her along her journey since she started showing symptoms. While they weren’t prepared for this news, they were appreciative to have the support of organizations like the Pediatric Brain Tumor Foundation who provide critical 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,” said Marcelo.

While pediatric low-grade gliomas have higher survival rates than other types of pediatric brain tumors, many PLGG patients face a life of chronic relapses and significant challenges. PBTF funds research along every stage of the drug discovery process, advancing the medical community’s understanding of these recurrences and uncovering promising new treatments that target tumor mutations. As a result, members of the pharmaceutical industry are beginning to invest in brain tumor treatments specifically designed for pediatric patients like Valentina. 

Although she fights her brain tumor every day, there’s more to Valentina than just her diagnosis. She’s a sweet five-year-old who brightens up her family’s day with her jokes and silliness. She loves art, baking, and swimming, just like her favorite princess Ariel.  

“A child with any kind of illness is a fighter. And it’s a fight that is worth it to fight along  side them. It is worth it,” said Jocy.

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