Shop AmazonSmile!

Read More »

Griffin loves music!

Read More »

Worm's Story

Matthew Joyce, a 19-year-old with cystic fibrosis (CF), from San Diego, Calif., led a fairly healthy life with the disease until his junior year in high school.  After a case of the flu, Joyce's health started deteriorating.  His weight dropped to a mere 78 pounds on his five-foot-three-inch frame and his lungs were not responding to the antibiotics prescribed by his physician.

Joyce's physicians quickly realized that he would need a lung transplant, which was devastating news to his family, as lung transplantation is the final hope for a person with CF. The search immediately began for potential living lung donors.  Yet, dauntingly, the criteria for donors are overwhelmingly stringent.  A donor must have the same blood type, be taller than the recipient and be in excellent health.  Unfortunately, no member of Joyce's family qualified to be a donor.

Hope was quickly fading for this remarkable young man, who was bravely hanging on with his every breath.  Joyce's mother, Debbie, is a longtime friend of Fred Phillips and his wife, Chris, fellow parents of a child with CF. Having a child of their own with the disease, the Phillips family knew that they had to step in to save a dear friend.  Fred Phillips knew right away that he could not sit back waiting for other people to step up to the plate to be tested as potential donors.  He immediately had extensive tests done and found out that he was a qualified donor.

The Phillips family has been involved with the Cystic Fibrosis Foundation since their oldest son was diagnosed with CF more than 25 years ago.  This experience with Joyce reaffirmed their commitment to find a cure for this disease. Fred Phillips' decision to actively participate in saving Joyce's life was not as difficult as one might expect.  Also having a child with CF, they understood the devastation the Joyce family was facing.  They were more than willing to help in any way they could, even if it meant donating part of a lung.

Since two donors were needed for the transplant, Joyce's cousin went to a local television station and made a public appeal in hopes of finding another potential donor.  The televised segment revolved around the fact that Joyce was a surfer.  Dave Manglos, a San Diego law enforcement agent, had delayed a commute home for a walk on the beach that very afternoon.  During his walk, he watched a group of surfers obviously relishing life.

Upon returning home and hearing the story on television, he turned to his wife and said, "I think I am supposed to do that."  Manglos had never heard of CF, and did not know Joyce, but simply heard a still, small voice that deeply compelled him to volunteer to help this young stranger.

He called the Joyce family right away and soon had extensive testing done, which determined he was the second matching donor.  By this time, Joyce's lung function had dramatically decreased and the doctors told the family he had less than 48 hours to live, but incredibly he had found two unselfish men willing and able to be his donors.

"It takes a very special person to give of himself so unselfishly.  I will be forever indebted to Fred and Dave for the gift they have given my son," said Debbie Joyce.

The transplant was performed on November 2, 2000 and was a resounding success.   The five-hour medical procedure involved the complete removal of Joyce's lungs, which were replaced with one lobe from Phillips and one lobe from Manglos.  The human lungs consist of five lobes; three on the right side and two on the left.

After the transplant, Joyce moved from the hospital into the Ronald McDonald House with his mother where he made a remarkable recovery.  He has graduated from high school since the surgery and continues to do well.

Phillips and Manglos acted quickly and with monumental courage and compassion.  Their heroic actions gave Joyce the opportunity to once again live his life, as he and all others should be able to.  The surgery was a testament to the power held by the scientific community to save lives like Joyce's and others suffering from CF. However, the actions of Phillips and Manglos are a testament to the power of human kindness and the bond that can be formed not only between friends, but also amongst strangers.

Matthew spent the next seven and a half years traveling the world on surf trips and making everyday of his life count.  Eventually he needed a second lung transplant and as soon as he received a call that there was a donor available, he rushed to Los Angeles to undergo the risky operation.  On April 7, 2008, Matthew Joyce died due to complications from the surgery.  His strength and love for life inspired many people. In order to honor him, family and friends have decided to continue the Big Worm’s CF Life Foundation, which Matthew created and dedicated all his time and energy.

Home | Past Events | Upcoming Events | Worm’s Story | Contact | Make a Donation | Links