Zeesy Bruk, all of 5, is no stranger to overcoming
challenges. Her parents, Rabbi Chaim and Chavie Bruk are co-directors of
Chabad-Lubavitch of Montana in the city of Bozeman (population about 42,000),
which serves one of the smallest and most isolated Jewish populations in the
United States.
In fact, her father says that it’s their family’s faith and
inspiration that helped them reach their most recent milestone: her appointment
as Montana’s 2016 Children’s Miracle Network Hospitals Champion Child. This
coming year, Zeesy and her family will serve as local, state and national
spokespeople advocating for charitable needs at children’s hospitals throughout
America.
“Zeesy was named the ‘2016 Champion Child’ for the state due
to her courageous battle with a rare genetic metabolic disorder characterized
by deficiency of a protein required for glucose to cross the blood-brain
barrier,” read a statement from Shodair Children’s Hospital in Helena, Mont.,
the only Children’s Miracle Hospital in the state. “This disease can sometimes
be misdiagnosed as epilepsy, which is what Zeesy was initially diagnosed with
due to her frequent seizures. However, her parents continued to look for
answers as Zeesy continued to experience tantrums and developmental
regressions.”
Living far from large hospitals—children do not come to
Shodair for medical treatment, but for genetic counseling—the Bruks
determinedly took their daughter to see specialists in Utah, Colorado and New
Jersey in their quest for answers. The challenge was compounded by the fact
that Zeesy, like her siblings, was adopted as an infant, so the Bruks were
short on details about her genetic history.
Eventually, it was determined that Zeesy had GLUT-1
Deficiency, a disorder so rare that she is the only person known to have it in
the entire state of Montana.
Working with experts at Shodair, the Bruks put Zeesy on a
glucose-free diet. As one of the few families who keep kosher in Montana, the
Bruks were no strangers to special diets, so they took cutting out glucose in
stride. Seven months later, they report seeing developmental increases, and are
looking forward to more positive progress in the coming months and years.
“There is no doubt that our family was greatly buoyed by our
faith in G‑d
and the inspiration we gain from the teachings of the Rebbe [Rabbi Menachem M.
Schneerson, of righteous memory], whose vision prompted us to make Montana our
home nearly a decade ago,” says Rabbi Bruk. “The fact that Zeesy will now be
traveling and inspiring others is the natural outgrowth of how we live our lives.”For its part, the hospital notes that she “continues to have
a carefree attitude and doesn’t let this diagnosis get in the way of her living
and loving her life.”
As Dr. Abe Elias, director of medical genetics at Shodair,
puts it: “Zeesy’s spunk and tenacity will serve her as she learns, with the
help of her parents, how to navigate and manage this genetic disorder, and live
life to the fullest.”
During her time as a Champion Child, the 5-year-old will
serve as ambassador for the Treasure State, bringing awareness to the various
medical challenges facing many young people today. Along those lines, she will
unite later this year with Champion Children from each state; they will visit
Washington, D.C, and Orlando, Fla., as part of an official Ambassador Tour to
highlight the vital work of children’s hospitals nationwide.
Zeesy’s first appearance is scheduled to take place on
Monday, March 14, at the Children’s Miracle Network Spring Kickoff Luncheon in
her hometown of Bozeman.
See video: https://vimeo.com/159006014
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