Founding Family Spotlight: The Roque Family

At Gift form a Child (GFAC) we empower families to make groundbreaking contributions to research to change the prognosis for children with brain cancer. In 2018 we gathered families from around the country to hear about their journey with children who died from brain cancer. This gathering became the launching point for GFAC. The family of Julian Roque participated in this event and is one of our founding families. They embody our mission to bring to light the importance of tissue donation and to make sure that all families have the opportunity to decide whether tissue donation is right for them.

Julian Roque was diagnosed with diffuse intrinsic pontine glioma (DIPG) when he was just two years old. DIPG is an aggressive, fast growing tumor that appears in the brain stem and is considered a terminal diagnosis. Julian passed away in 2018, four years after his diagnosis. Since Julian’s passing the Roque family has been dedicated to raising awareness of DIPG with the goal of ultimately curing this disease.

Julian’s family made the courageous decision to donate his tumor to research and have since become advocates for tissue donation. In an interview about the impact tissue donation has had on their family Julian’s dad said “Julian knew that his donation was going to be meaningful. It made him happy. He knew that by donating his tumor that his friends might be saved some day.”

Julian’s legacy has lived on in his community. Julian loved superheroes and took on cancer with the spirit and strength of his favorite heroes like Spiderman, the Hulk, Captain America and Batman. Last year the Lennox School District in South Dakota designated May 17th, National DIPG Awareness Day, as Superhero Julian Day.

Julian’s family carries on his legacy by continuing to help other families in this devastating position. Last December marked the 9th annual Superhero Julian Toy Drive. At just three years old Julian would go around the infusion room giving his toys away to other children also undergoing chemo. Inspired by Julian, the Roque family collects and drops off donated gifts to hospitalized children who are unable to spend the holidays at home with their loved ones.

We are proud to honor the Roque family for their continued dedication to improving the lives of children and families impacted by pediatric brain cancer.

Watch Julian’s parents and other families discuss what tissue donation has meant to them:

Watch Julian’s parents discuss their journey in Spanish:

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