Editor’s note: This article was a winner in the Outstanding Youth category of the America Inspired Contest, which celebrated extraordinary people making a difference across the United States. We invite you to read about these amazing people.

Unlike James Dean, who played the role of a troubled teen in “A Rebel Without a Cause,” Carlsbad, California resident Sean Young is a focused young man on a real-life mission. Sean inherited two recessive genes, one from each parent, which blighted him with cystic fibrosis (CF). The disease causes thick mucus secretions to form in his lungs, intestinal tract, pancreas, and other organs. Sean is now 13 years old; the current average life expectancy for people with CF is age 37.

Although that prediction is unsettling, a few decades ago, many children with CF did not live long enough to attend kindergarten. The thick secretions clog the lungs, making them susceptible to infection. Sean spends more than an hour a day attached to a device to break up the secretions. Sean’s intestinal tract does not function properly, thus he is on a special diet and takes digestive enzymes with each meal. His pancreas is also affected and he was recently started on insulin. Sean takes up to 30 pills a day and has been hospitalized eight times.

Of course, confronting a serious illness on a daily basis has had a significant effect on Sean and he does experience episodes of depression. However, Sean’s focus is on leading a normal life. He attends eighth grade at Oak Crest Middle School in Encinitas and maintains an excellent GPA; he plays sports; he does his share of family chores and hangs out with his friends. Oh, one more thing, he has become a spokesperson and advocate for CF, aided by his parents, Robert and Katrina, as well as his sisters, Carolyn and Allison. What follows is a summary of Sean’s accomplishments.

• Sean was diagnosed with CF on May 3, 2000, four days before his second birthday.
• Sean and his family have participated in the Great Strides National Walk Event every year since 2001 (2001: eight walkers raised less than $500; 2011: 350 walkers raised more than $104,000).
• Sean has been the CF golf tournament ambassador since 2007.
• Sean has been an honorary co-chair of Great Strides since 2007.
• Sean has given nearly 30 speeches about CF.

2001: Sean and his family organized a CF walk in Ohio, their home state at that time; only four couples participated. The walk raised less than $500.

2002: 25 walkers raised a total of approximately $1,000.

2003: The family moved to San Jose and the walk was dubbed "Sean’s Super Striders" in honor of Sean’s hero Superman. As everyone is aware, Superman is all-powerful.

2004: The family moved to Carlsbad. That year Sean’s Super Striders (40 walkers, including his kindergarten teacher) received 160 donations and raised more than $15,000.   

2005: Sean was a first grader, a goal not reached by most children with CF 50 years ago. This fact was the opening line of that year’s fundraiser letter. Sean underwent his first sinus surgery that year.

2006: Second-grader Sean’s team doubled in size to about 80 Super Striders; almost $20,000 was raised. The team was rated among the top five fundraisers in San Diego. That year, due to cost restraints, rather than supplying T-shirts, each walker was given a less-expensive baseball cap.

2007: Sean is in third grade and his team is comprised of approximately 130 walkers; more than $23,000 raised. Sean’s Super Striders are again among the top five fundraising teams in San Diego. Sean began giving speeches for the CF Foundation. Many individuals have an innate fear of public speaking, but compared to his other challenges, public oration is a piece of cake. His first speech, which was given to the Encinitas Chamber of Commerce, described what it was like to live with CF.  That year he was hospitalized for the first time in several years. He was admitted on January 2, the day before his dad's birthday. The family celebrated Robert's birthday in the hospital and wondered how many future family events would be spent in a hospital room.

2008: Sean was hospitalized again in the summer between his fourth and fifth grades. The Super Striders Team has continued to grow; with 140 walkers, it raised about $20,000. Sean's kindergarten teacher still walks with the group, which is comprised of friends, neighbors, classmates, teammates, family, and family friends. Sean became the ambassador for the CF Golf Tournament and started speaking at a handful of CF events to raise awareness.

2009: Sean’s team reaches approximately 180 walkers and raises $22,000. Sean speaks at a Great Strides walk for the first time. He stands next to an almost 50-year-old woman with CF. Together they represent the advances that have been made as well as the promising future of CF. Sean speaks at the golf tournament as the ambassador. He also speaks at some local companies, several of which manufacture pharmaceuticals. Sean’s family is proud that Sean is not only raising awareness but also thanking the people who work so hard to find treatments –– and hopefully a cure –– for his disease. That summer, Sean is hospitalized again.

2010: Sean’s team exploded with support: approximately 250 walkers. Friends are now bringing friends with them to walk and support Sean. Almost $80,000 is raised, making the Super Striders the top team in San Diego and the ninth largest Great Strides team in the nation. Sean gives a heartfelt speech at the walk and is surrounded by all of his friends and family. His sixth grade teacher walks with him and his kindergarten teacher is still walking with him. With a broken arm, he participated in a drug study trial and gave a speech to the CF golf tournament as its ambassador. He also was invited to give a speech at Vertex Pharmaceuticals to kick off their Great Strides efforts. Paul Negulescu, vice president of research at Vertex La Jolla, gives Sean a private tour of the labs that are working on the VX770 chemical assays. He shows Sean a video of a working CF lung before vx770 and after taking vx770. Sean joins Paul again at two other CF fundraising events. Sean is hospitalized over the summer again and has his second sinus surgery.

2011: Sean’s team continues to grow in numbers, donations, and support; it raised more than $104,000 and is rated the fifth largest CF team in the nation. Equally as important, 350 walkers participated in the event. Sean kicked off the Encinitas walk along the Pacific shore with a speech. The CF Foundation brings out a birthday cake to celebrate all the extra birthdays CF victims are celebrating now because of ongoing efforts. Sean is now a recognized figure at the golf tournament and receives high fives from the regular CF Golf Supporters. He received a standing ovation after his speech. Sean escapes the hospital that year for pulmonary problems; however, he was admitted for CF-related diabetes. With vx770 (Kalydeco) being reviewed by the FDA for approval and the hope of vx809 finishing up stage three of its clinical trials, this promises to be a huge year for CF medical research. Sean says that he will talk to any company that wants to learn more about CF and the quest to find a cure.

Click on this link to learn more about CF.