Sean JuchaImage result for Sean Jucha, sean strong


Image result for Sean Jucha, sean strong Sean Jucha was your typical 10-year-old boy until August 2013 when he was diagnosed with Gliomatosis Cerebri. Sean was admitted to the hospital for uncontrollable seizures out of the blue one late summer day. It took several weeks, multiple tests, and eventually a brain biopsy before the diagnosis was given by Dr. Peter Manley.
The diagnosis was devastating, but the family was advised by Dr. Manley at Dana-Farber Cancer Institute that despite there being no cure, and limited to no treatment options, they would treat him very aggressively. He bravely battled this disease without ever complaining or giving up.
Sean completed 3 rounds of radiation therapy during his 3-year battle, (IMRT, Hyper fractionated and finally lower dose to the cerebellum) and many rounds of chemotherapy as well as EGFR blockers in attempts to stop the progression of this fatal disease.

All while Sean was battling Gliomatosis Cerebri, he lived his life the way any other child would live. He rarely missed school, he was never hospitalized after his initial diagnosis, and he played on multiple sports teams. He also attended all his school functions and activities. There were many people in Sean’s community that knew little to nothing of the gravity of his prognosis or extent of his illness due to his high level of functioning during his courageous battle.

The day Sean began his second round of radiation therapy, Sean ran the 1-mile apple race at his school beating many of his peers. When Sean was asked why he chose to run that race despite a particularly hard day at the hospital his response was “Because I can!”His response truly exemplifies the power of his spirit and was how Sean lived his life despite his diagnosis with terminal cancer.

On August 28, 2016, at the age of 13, Sean lost his battle with Gliomatosis Cerebri. His brain was donated to Dr. Mark Kieran at Dana-Farber for research, which is the greatest gift to help search for better treatment options and eventually a cure. In addition, it is the family’s mission to raise money specifically to fund the research of Gliomatosis Cerebri, which gets limited to no funding, as well as raise awareness of this very rare tumor.

Sean has served as an inspiration to not only his family and friends but to his entire community. Click here to learn about the family’s project in honor of Sean

ENROLL IN THE REGISTRY

The GC Registry aggregates data and tissue samples from patients around the world. Intensive study of these samples and data will help unlock the mysteries of this terrible tumor.

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COMMUNITY

Join the advocacy and become part of the community that was established to support groundbreaking research in finding a cure for Gliomatosis Cerebri. Partners are either family touched by Gliomatosis Cerebri or foundations supporting the same cause. Click below to learn how to join the community.

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