Known as JW to family, friends and many he touched but never met, he spent most of the last two years in and out of Kaiser Hospital for operations, radiation and chemotherapy treatments.

Diagnosed with a terminal brain tumor, JW fought for the extra time and channeled his energies into making his dream of a JW House come true—a place where families of young cancer victims like him could stay without charge while treatments were going on.

Willow Glen resident Debra Weed is a close family friend and is heavily involved in fundraising for the JW House. She spent most of Aug. 2 with JW and his family. "It was his twin sisters' 10th birthday [on Aug. 3]," she says. "The family's looking at it like, he was born into heaven on the same day as his sisters' birth."

On March 20, JW saw a key step in his dream with the site dedication for the JW House on the edge of Kaiser Permanente's new hospital on Homestead Road and Lawrence Expressway in Santa Clara.

He listened to the dedication speeches; his mother, Anne-Marie Knapen, spoke on JW's behalf. At the end of her talk, she looked straight at him and said, "And you know what JW says."

At that point, JW shouted out in a strong voice, carrying over the wind and rain, "Never ever give up!"

That has been JW's mantra from the start and is now printed on blue wrist bands that are sold for $2 each to raise funds for the house. More than 50,000 bands have been sold thus far.

Weed says even before the concept of JW House came about, JW was thinking about others. He was the one who came up with the idea to have his brain donated to science—instructions which his parents followed after his death.

JW's dream was inspired and evolved from his friendship with Dr. Alan Wong, his pediatric oncologist.

The two met in late 2002 when Wong first started treating JW.

From the start, their relationship went beyond doctor and patient.

"I'm very attached to all my patients, but the difference between JW and other patients is he came and offered me his friendship," Wong said. "We deal with a very emotionally tense period of someone's life. We become close, but not many during that fight say, 'Oh, I'm going to care about you too.' "

Yet, JW did care and listened when Wong told him he wished for a residence house where families of long-term patients could stay while their child was undergoing treatment. When he needed brain surgery in Sacramento, JW's mother spent that week sleeping in a hospital chair.

While his cancer was in remission following that surgery, it returned in April 2004 just as his family was readying a trip to their native Belgium and a large reception for family and friends.

JW could not make the trip, and unbeknownst to anyone, he had planned to ask for contributions at the reception to build the house his oncologist had wished for.

Anne-Marie Knapen shared this via email with a friend in Belgium, who forwarded it.

By May, JW had collected $10,000, which he proudly passed on to Wong.

Through media reports and grassroots efforts by community friends, school and church, the fund started to grow. Barbara Mount, JW's liturgical music teacher at Bellarmine, introduced JW to Helen Marchese Owen, a well-known fundraiser in Silicon Valley and a Cupertino resident.

Owen and Mount organized "Doodles and Giggles," an exhibition and auction of JW's artwork on Nov. 6, 2004, which brought in almost $22,000.

Owen estimates they will need $1.2 million to build, furnish and fund the first year of operation for JW House, an amount she hopes to raise by the end of 2005.

Weed says the group has collected a little more than $500,000 and is in the process of meeting with architects. "His mom promised him that this will happen and I'm sure it will," she says.

A memorial service for JW Knapen will take place at St. Martin of Tours, 300 O'Connor Dr. on Aug. 18 at 6 p.m., with a reception to follow at Bellarmine College Preparatory, 960 W. Hedding St.