jwhouse.org
Never Ever Give Up!
Meet JW
JW Gets Leukemia
Jan-Willem Knapen (JW) was born to Geert and Anne Marie Knapen on September 22, 1988 in Leuven, Belgium. Two months premature, JW weighed only 3.19 lbs (1.450 kg) at birth. Nearly four years later, on September 25, 1992, JW was diagnosed with acute lymphoblastic leukemia (ALL). Leukemia is a cancer that affects the body’s ability to produce healthy blood cells. JW’s leukemia was treated with chemotherapy to kill the cancer cells in his blood and radiation therapy to kill any cancer cells in his brain. Fortunately, the treatments were successful and on February 2, 1998, JW’s doctors considered him “cured”. To read JW’s personal account of his fight against leukemia, click here.
JW Becomes A Big Brother
In the midst of JW’s battle with cancer, a very special thing happened: his twin sisters, Helena and Elisabeth were born. Then in July of 1998, JW and his family moved from Belgium to San Jose, California. 
It was there that on November 30, 2000, JW’s brother Alexander was born. From the beginning, JW and Alexander have had a special relationship. JW was honored to be named as Alexander’s godfather, and Alexander so adored and mimicked his older brother that he was affectionately given the nickname “Mini-Me”. To read what JW wrote about the day of his brother’s birth, click here.
JW Enters High School
In August of 2002, JW proudly began his freshman year at the prestigious Bellarmine Preparatory School. To read a letter JW’s mom sent to him during his beginning-of-the-year retreat, click here.
JW Is Diagnosed With Brain Cancer
On November 29, 2002, JW was rushed to the hospital after having seizures. After many tests, doctors found three different lesions on his brain – the largest of which was located in his right frontal lobe. His oncologist, Dr. Alan Wong, began JW on a strong course of chemotherapy. To read the Knapen’s Christmas greeting, written just before JW’s diagnosis, click here. To read a letter JW wrote to his classmates after his diagnosis, click here. JW also wrote a letter to a Belgium organization that raises money to fight cancer. To read this letter, entitled “Never Ever Give Up”, click here.
JW Has Brain Surgery
Unfortunately, chemotherapy proved ineffective against JW’s brain tumors, so on March 30, 2003, he underwent surgery to remove as much tumor as possible from his right frontal lobe. The surgeon was unable to remove all of the tumor and JW underwent more chemotherapy and radiation for the next two months. To read what JW wrote after his surgery, click here.
JW Shares His Story
While JW was undergoing all these treatments in America, people in Belgium had been following his situation closely. One particular television station, VTM, read JW's "Never Ever Give Up" letter and decided to do a story featuring JW. One day in May, a camera crew flew to California to film JW, his family, and the medical team that had been caring for him. This television special then aired in Belgium and introduced JW's story to thousands of viewers. To see a web site created by one of JW's friends that has updates on the media coverage in Belgium, click here.
Life Goes On
For the next few months, JW enjoyed life with some normalcy. He returned for his sophomore year at Bellarmine and enjoyed playing tennis. To read what JW wrote about starting school, click here. To read the Knapen’s Christmas greetings for 2003, click here.
Inspiration During A Difficult Time
However, early in 2004, JW’s health slowly started to decline. He had trouble with his balance and developed double vision. On April 10th, JW was hospitalized and doctors learned that he had a tumor growing on his brainstem. Desperate to control the cancer, doctors began JW on an experimental drug and yet another round of chemotherapy. It was during this time that JW and Dr. Wong first began speaking of an idea to build a “home away from home” for families of hospitalized patients.
Then, on Mother’s Day 2004, JW became so ill that doctors told his family his death was imminent. JW had different plans, though, and to everyone’s disbelief he recovered. He left the hospital more inspired and determined than ever before to make JW House a reality.
Back in Belgium, JW’s friends were eagerly awaiting a reception planned by the Knapen family, where loved ones could see JW and honor his courageous fight. Traditionally, the guest of honor at such a reception would receive gifts, but JW had already requested that friends and family donate money towards his “dream project” in lieu of gifts. When his friends in Belgium learned that he would be too ill to travel, they began sending checks in an amazing display of generosity. In just a few short weeks, JW proudly presented Dr. Wong with a check for $10,000. This money became the foundation for what is now the JW House Fund.
JW Fights For His Life
The next two months were filled with excitement as JW continued to receive donations for his project. It became obvious that his idea had touched the hearts of many as plans for the JW House began to take on a life of their own. But the excitement ended abruptly on the morning of July 11th, 2004 when JW’s mother awoke to find JW seizing in his bed. He was rushed to the Pediatric Intensive Care Unit where doctors put him on a ventilator to help him breathe. Heavily sedated and hooked up to numerous monitors, JW was again on the verge of death. Doctors feared that even if JW survived this crisis he might have permanent brain damage that could leave him unable to speak, remember, or even breathe on his own. But with amazement, loved ones watched as over many tenuous hours and days JW’s condition began to improve. Almost six weeks later he was able to leave the hospital. Numerous tests revealed that JW’s cancer had spread to his spinal fluid (the fluid that circulates through the spinal cord and bathes the brain) and had also spread to his spine. With guarded optimism, doctors sent JW for more radiation and resumed chemotherapy. JW had once again beaten the odds, but this last battle left him immensely weakened with tremors, some memory loss, double vision, and pain. It did not, however, rob him of his spirit.
JW Update - June 2004
JW has finished his radiation but continues to receive chemotherapy. To read a letter JW wrote to local journalists about his current condition, click here. To read the Knapen's Christmas greetings for 2004, click here. To hear a song about JW written and performed by Jenny Case from Songs of Love, click here. Although doctors feel there is little or no chance to stop the spread of his cancer, they continue to treat JW palliatively with the goal of making JW’s life as comfortable as possible. They also know that JW has surprised them before and that he is capable of doing so again. Since his last hospitalization JW celebrated his 16th birthday and has immersed himself in planning, promoting, and fundraising for the JW House. He is touched by the kindness and love others have shown through their support of his dream. Although his health is slowly deteriorating, he remains steadfast in his mission to create a legacy so other families can be close together during times of need. For him, JW House embodies those things that have been most important in his life: family, love, friendship, kindness, generosity, and courage. Ask JW what life has taught him and he will answer simply: “NEVER EVER GIVE UP!”
JW Update - July 2005
It has been more than a year since JW first set out to build his dream house. He has been the recipient of numerous awards and honors, including proclamations from the Santa Clara City Council, Santa Clara County, City of Cupertino, State of California, and United States Congress. He was also presented with the Jefferson Award for Public Service, a personal letter from Governor Schwarzenegger, and a very special Bellarmine Award for Outstanding Leadership Service. For more details about these awards, please visit the Media Coverage section of this website.
JW also took part in his “best day ever” when he was transported by ambulance to the JW House land dedication ceremony at the new Santa Clara Kaiser campus. When JW arrived on scene, he was greeted by a standing ovation, cheers, and even some tears. It was a day that will not be easily forgotten by those in attendance.
Medically, JW’s life continues to be challenging. In past months he has endured seizures, comas, infections, new tumors, and blood clots. His mobility is greatly compromised and he has lost both vision and hearing on his left side. However, JW’s spirit remains unbroken. After numerous lengthy hospitalizations, he is now living at home and passes time by watching movies, playing cards, drawing, and spending time with his family. He enjoys reading entries from the JW House website guestbook and continues to inspire those who hear his story. He continues to make plans for his future and still hopes to stay well enough to be present at the JW House’s official opening! With more than $500,000 already raised towards this cause, we truly hope to help JW realize this dream. Our year-end goal of $1.5 million is daunting, but like JW we will never ever give up!
Born onto Earth - Sept. 22, 1988; Born into Heaven - August 3, 2005
On Wednesday, August 3rd, Jan-Willem was called home to Heaven. Surrounded by family and friends, his passing was peaceful, beautiful, and overflowing with love. In his final days, JW reminded us about the “simple” things in life – how a hug, a kiss, a smile – speak louder than any words. He reminded us to cherish one another, to embrace each moment without being afraid of what the next may bring, and to believe that together we can make a difference in this world. As JW’s smile shines on us from above, he asks us to carry on the kindness, humor, courage, and hope that allowed him to live life to its fullest.
JW’s compassion and determination to help others and his promise to "Never ever give up" remained consistent throughout his life and his death as well. Near the end of his life, JW was pleased to learn that he would be able to donate his brain for research – with the hope that he would be able to contribute to finding a cure for brain cancer. And, although JW will be missed, his legacy will live on through the JW House and the help he’ll provide for others who will need support as they fight illness in the future.
Please read the touching message JW’s mom sent after her son’s death and hold her words close to your heart.
It’s Wednesday evening and I’m exhausted.Nevertheless, I would like to write a few sentences…
Today, at 11:25am, JW went Home.
Geert and I, our family, friends and the staff of Kaiser Santa Clara (thank you, thank you, thank you!) got the opportunity to stay at his bedside ever since yesterday morning. And after a long, challenging battle, JW finally found Peace. He moved on to his New Life in a very peaceful way and from now on lives with the Lord. His lips smiled – beautiful -- Sun…
Today was a bittersweet day: a day of overwhelming sorrow but also a day of gratefulness and celebration and Love…
The girls celebrated their tenth birthday here with us and JW started to celebrate the first year in his New Life…
We cried out loud for having to let go a Sunshine Child but we also laughed with the fun we had together, the jokes and with all the beauty our boy sent into the world – JW touched the hearts of so many people. And lots of friends cried with us, laughed with us and were there for us…
Dear JW, we love you sooo much and we are happy that you were able to find the Ultimate Peace. We will never ever forget you!
We will continue building the JW House and Dr. Wong made your ultimate dream come true: he helped you donating your brain to researchers. So, that one day, others who suffer from this horrible disease hopefully will be able to survive it.
Dear all, nearby and far away, thank you so much for your prayers and support; thank you for the cards, thank you for spreading the Never Ever Give Up!-dream; thank you for everything!
There’s one thing that JW taught us for sure: Love and caring are the basics of life, being good for one another… I often think about this “root value” when my day doesn’t bring me whatever I was hoping for. Our son also taught us to always look at the bright side of life. Indeed, a positive attitude makes everything so much more enjoyable!
P.S. We never ever say goodnight or leave without solving the smallest problem we had. And that feels so good. Thank you, dear son!
JW, we thank you for allowing us to come along on your wonderful journey. You changed the lives of so many with your beautiful smile, the twinkle in your eyes, and the pure sunshine that radiated from your soul. And though the world will never be the same without you, we hold tight to the wisdom and strength you’ve shared with us. You will never be forgotten.