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.
