It has a deceptive, scholarly name. The kind of name you'd expect to come across while flipping through National Geographic.
Referring, maybe, to light diffraction in the farther reaches of the
Milky Way. Or the unique manner in which rare Peruvian orchids attract
hummingbirds in the Andes. In
fact, Diffuse Intrinsic Pontine Glioma is every parent's nightmare.
It's a rare, inoperable tumor, located where the spinal cord meets the
brain. It's the most feared of pediatric brain tumors. There is no cure.
The survival rate is zero.
to her mother, five-year-old, cute-as-a-button Maddie James's “balance was
a little off” and she seemed “more tired than usual.” A precautionary
CT scan was scheduled at Children's Hospital of Orange–and it revealed
According to her mother, five-year-old, cute-as-a-button Maddie James's “balance was a little off” and she seemed “more tired than usual.” A precautionary CT scan was scheduled at Children's Hospital of Orange–and it revealed the unthinkable.
Jan. 16, Kajsa James and her attorney husband, Collie, learned that
their only child was dying. DIPG initially causes a deterioration in the
ability to walk, followed by a steady loss of motor control throughout
the body. Death is inevitable, and not far away. For the Jameses, the
only solace was that the disease typically does not cause significant
kindergartner at St. Anne School, Dana Point, who loved the ocean and
everything in it and called Dana Point's Ocean Institute “the best place
ever,” died March 13. Her ashes were spread at sea.
parents had been determined for a while to see her memory live on and,
serendipitously, the Ocean Institute had offered the perfect
opportunity. There were expansion plans for an educational center for
children “right on the water,” they'd been told. It was shovel-ready,
permits all in place. The biggest holdup? Money.
Maddie saw her mother studying plans for the center and was told what
they were for, she asked: “Are we going to help them build it?” With all
her heart, Kajsa assured her: “Yes, we are.”
$4 million center would introduce thousands of K-12 students and adults
to all aspects of oceanography, environmental science and maritime
history. A series of learning stations has been carefully designed to
provide immersion-style education. Maddie would have reveled in it.
Founded by her parents, the Maddie James Foundation has currently raised nearly $400,000 toward helping the Maddie James Seaside Learning Center become a reality.
The latest in an ongoing series of fundraisers, the inaugural “A Mile for Maddie” is
a leisurely 1.2-mile walk along the stunning coastal bluffs of Dana
Point. Spectacular views and some impressive homes are on the route.
all participants, there are T-shirts, refreshments, live music, crafts,
and self-guided tours of the Ocean Institute and the famous Pilgrim, a full-size replica of the trading brig that in 1831 brought to the area Harvard student (and, later, author of the classic Two Years Before the Mast) Richard Henry Dana, after whom the city is named.
chair of the walk is Bethany Hamilton, the pro surfer who lost her left
arm to a 14-foot tiger shark. She's the inspiration for the current
movie Soul Surfer, starring AnnaSophia Robb, Helen Hunt, Dennis Quaid and Carrie Underwood.
stoked to help spread the word about the Maddie James Foundation and to
honor this brave little girl's memory” Hamilton said.
and I both love the ocean, so it is a privilege to help share what we
care about so deeply and to educate future generations on the importance
of the sea and its wildlife.”
foundation's initial goal is to raise $1 million. As the organizers
readily admit, that may be reaching for the stars–or, in this case,
the sea stars.