Sean Jucha's Giving Page's Fundraising Page

Thank you for visiting Sean Jucha's Giving Page. We appreciate your interest in Sean's story; a courageous battle against Gliomatosis Cerebri, a rare inoperable brain tumor. Your generous donation will go directly to funding research on the specific type of tumor that claimed Sean's Life.

Sean's Diagnosis

Sean was a healthy and robust boy until the summer he turned ten. It was then that Sean's battle with Gliomatosis Cerebri began. Sean was diagnosed with the malignant brain tumor after being admitted into the hospital for seizures during a family vacation in Rhode Island. After a few days at a hospital in RI, he was transferred to Boston Children's Hospital where he had a team of experts from infectious disease, neurology and eventually neuro-oncology trying to determine the exact cause of the seizures. Sean's rare tumor grows like a spider web unlike a solid mass as with most tumors. The tumor's rarity, presentation and cancerous threads made an accurate and expedient diagnosis challenging for Sean's medical team.

It was over 2 weeks of hospitalization in the ICU, numerous tests and eventually a brain biopsy before Sean and his family was given the diagnosis of terminal cancer. Dr. Peter Manley of Dana-Farber gave the Jucha's the diagnosis and advised the family they would treat Sean very aggressively. With the help and guidance of Dr. Manley of Dana Farber, and Dr. Kanwar at Albany Medical Center, Sean was able to sustain almost 3 years of aggressive, challenging treatments in an attempt to halt the progression of this fatal disease.

Sean's Life

Sean Jucha came into the world on June 20th thirteen years ago. The name Sean, meaning, "Gift from God" was given to him by his loving parents Heather and Robert Jucha. Sean is the first child born to Heather and Bob and was joined six years later by his little brother Ryan.

Sean has spent the majority of his young life participating in activities all boys and young men enjoy. Sean being a lifelong resident of East Greenbush, New York takes advantage of all that his community has to offer. He has been a member of the EGB/Castleton Little League since the age of six. Sean is a huge baseball enthusiast and dedicated fan of the Boston Red Sox, who have embraced him during his illness. The Red Sox organization and players have afforded Sean with many opportunities to watch and participate in games at Fenway. The Red Sox honored Sean with an opportunity to throw out the first pitch at a summer game in 2014. Sean fearlessly and accurately threw the first pitch over home plate in front of over 19,000 fans.

While playing and watching baseball is Sean's favorite pastime, he did not limit himself to one sport. Sean is a long-standing member of the EGB Basketball association; he joined his Middle School Volley-ball team and dabbled with golf during the summer months. Sean enjoyed running as well where he consistently placed at the top of his class in field day races. In October of 2015, the very day he began his second course of radiation treatment for a new tumor in his frontal lobe, Sean ran a 1-mile apple race at his school. When Sean was asked why he chose to run a mile after an exhausting day at the hospital, his response was, "Because I can". Sean took part in so many activities and performed at such a high level during his battle with cancer that many people in the community knew little to nothing of the extent of Sean's illness or the gravity of his prognosis. Sean tried his very best to live a normal life despite some very unfair circumstances and never asked for any special accommodations because of his illness; in fact- he politely declined them when offered.

Sean's zeal for life extended beyond sports. Sean has been an accomplished student. While waging his battle with cancer, he has attended school -all the while going through a rigorous medical regiment of chemotherapy and radiation that often left him weak and tired. After a particularly difficult day of treatment, Sean's mother Heather asked Sean if he planned on attending an evening activity at his school, to which he replied, "Why wouldn't I?" Sean's reply fully exemplifies the power of his spirit and will to not only live his life but to live it full and to live it well.

Sean enjoys the company of his friends, cousins and dog Goldie. There have been many young men and women in our immediate community and beyond who are blessed to have known Sean and to call him friend.

Honoring Sean's Life

You can Honor Sean's Life and assist families like the Jucha's in their battle against this deadly disease by donating to Dana-Farber and the Jimmy Fund whose sole mission is to conquer childhood cancer. These funds will be specifically directed to some of the country's top medical researchers who are currently working to find a cure for the tumor that claimed Sean's life. The Jucha Family thanks you for your generosity and support in honor of their son Sean.

Dana-Farber is an official charity in the New York State Employees Federated Campaign (SEFA). Dana-Farber's charity number is 999-02194. If you would like your SEFA donation to be directed to Sean's Fund please contact Rebecca Shortle in Dana-Farber's Philanthropy Office at (617) 632-4215 or Rebecca_Shortle@dfci.harvard.edu.