[UPDATED with Million-Dollar Baby:] Coastal Walk in Memory of Maddie James--a Little Girl Who Loved the Ocean

Maddie James, 2005-2011.
UPDATE, JUNE 13, 2:04 P.M.:

There were smiles, speeches and applause--and more than a few tears among the 100 invited guests.

They were at a private dedication ceremony Saturday at Dana Point's Ocean Institute, on what would have been Maddie James's sixth birthday. The ceremony followed a three-month campaign to raise $1 million to name a soon-to-be-built Seaside Learning Center after her. There was an outpouring of support from across the U.S., with more than 6,000 donations and some 35 individual fund-raising events.

In January, doctors diagnosed the kindergartner with an aggressive and inoperable brain tumor and she died in March. Shortly before her death, her parents, Kajsa and Collie James, started the Maddie James Foundation to memorialize their only child's love of the sea and the Ocean Institute.

The learning center will feature a 300-foot Science Landing with aquariums for animals collected by students, opportunities to drive an underwater remote-controlled vehicle and a grow-out pen for white sea bass. There will also be a 100-foot Maritime History Pier with davits to help raise and lower a long boat, a boom crane for moving heavy cargo, a capstan, a yard and a sail.

Kajsa James said, "Through the learning center, thousands of children will have the opportunity to see the ocean through Maddie's eyes--with wonder, love and respect."

During the ceremony, the Jameses filled a glass carafe from the ocean. Ocean Institute president Dan Stetson, explained, "There is an age-old tradition of christening a vessel with wine or champagne for good luck. Using this symbolism, Kajsa and Collie are drawing water from the harbor that they will use to christen the Maddie James Seaside Learning Center at our grand opening later this year."

It was a bittersweet day for the Jameses. Wayne Redfield, chairman of the institute's board of directors, led the guests in an impromptu, emotional chorus of "Happy Birthday" to Maddie. Holding back tears, Collie James said, "Happy birthday, sweet girl. Mommy and Daddy love you with all our hearts and all our souls. We hope you like your present."


 
ORIGINAL POST, MAY 2, 3:10 P.M.: 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.

Maddie with her mother, Kajsa.
Maddie with her mother, Kajsa.

Maddie with her mother, Kajsa.

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.

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.

On 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 pain.

Maddie, a 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.

Her 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.

When 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."

The $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.

Maddie with her father, Collie.
Maddie with her father, Collie.

Maddie with her father, Collie.

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.

For 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.

Celebrity 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.

"I'm stoked to help spread the word about the Maddie James Foundation and to honor this brave little girl's memory" Hamilton said.

"Maddie 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."

The 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.

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