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April 21, 2005 - Sarah Buehrle / Pulse Journal
A West Chester Twp. boy’s losing struggle with an inoperable tumor
has transformed into a nationwide networking effort with celebrity
spokespeople.
Jeffery Thomas Hayden began to have headaches in the fall of 2003. By
January 2004, the sixth-grader was diagnosed with a brain tumor the size
of a golf ball located on his brain stem. Jeffrey died one month before
his 13th birthday, in September 2004.
Jeffrey’s father, Tim Hayden, started a foundation in his son’s name the
day after he died. The Jeffrey Thomas Hayden Foundation has raised
nearly $50,000 in the past year, $35,000 from private donations.
“It gives me a mission. It’s made getting up in the mornings easier,”
Hayden said. “There are some mornings when you go, ‘Why did my kid have
to die?’ We’re trying to drive change.”
The JTHF is multi-faceted. It donates money to the Make A Wish
Foundation, the Lance Armstrong Foundation and to CancerFree Kids for
research.
The JTHF is creating a scholarship to Ohio State University. The
scholarship, which will be granted to a student whose life has been
personally touched by cancer, is scheduled to be granted around the time
that Jeff would have entered college.
Hayden said the foundation will eventually become a clearinghouse for
information on inoperable brain tumors. He said when his son was
fighting cancer, the lack of accessible information was frustrating.
“When the doctor says your child has 12 months to live, it’s hard to
get the real facts,” Hayden said. “Some doctors don’t want to tell you
all the bad news. I was so frustrated with the barrier. As a parent, we
were left to make decisions with basically only half the information.”
JTFH.org will become that clearinghouse for information. That
information will be corroborated by a panel of medical experts —
including the chief of neurology at California Children’s Hospital of
Orange County.
The California connection happened because the JTHF is the official
charity of the Anaheim Might Ducks hockey team. Coach Mike Babcock knew
Jeffrey, who played with his son when Babcock was coach of the
Cincinnati Mighty Ducks.
Babcock gave the eulogy at Jeffrey’s funeral.
“Jeffrey was about packing as much into a day as possible,” read
Coach Babcock from the eulogy, still on his computer. “He loved to
compete. He loved to win. It was hard to slide anything by him.”
Babcock said he will always remember Jeffrey in his OSU jersey,
trendy sneakers with a gleam in his eye. His love for Jeffrey, as well
as his own experiences with cancer, motivate him as speaker for the
JTHF.
“Cancer has touched my life in so many ways,” Babcock said. “Enough’s
enough.”
Hayden said in addition to medical information,
JTHF.org will also provide an
anonymous place for parents to share their stories. Because doctors
oftentimes will not direct patients to others with the same disease,
parents have formed their own “underground” network, which Hayden
intends to facilitate online.
“We try everything. Ninety percent of parents are doing more —
Chinese medicine, acupuncture — and don’t tell their doctor,” Hayden
said. “We’ve all been through the same thing. Our children went through
the same side effects. The idea is to create this data base for parents
who have to make these decisions."
The Web site is already up. The confidential forms will be available
within 60 to 90 days for parents to sign up to share their child’s
battles with cancer.
The foundation will also sponsor a 5K walk May 21 at the Ronald
Reagan Voice of Freedom Park in West Chester Twp. For more information
visit www.JTHF.org.
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