Today, Sean Young was announced the winner in Examiner’s America Inspired Contest in the Outstanding Youth category. I want to express my sincere gratitude to those who voted for Sean and helped propel him to victory. Sean, who suffers from cystic fibrosis (CF), is truly an outstanding youth. Last year alone, he raised more than $100,000 for the Cystic Fibrosis Foundation. He plans to donate most of his $10,000 prize money to the foundation. This illustrates an important point: of more significance than the prize is that the contest increased awareness of the disease and will result in additional funding for CF research. Yesterday, the FDA approved the drug Kalydeco for the treatment of CF. It will treat only one of the CF mutations, which is not the one Sean possesses. However, Vertex Pharmaceuticals is researching medications to treat other of the many variants of the disease.
I would like to share with you the story of another CF patient, Leslie Petrone Hopkins, who succumbed to the disease last October at the age of 50. That age is far above the age attained by the average CF patient; however, it is well below that of a healthy Americans who does not suffer from CF. Survival depends on a number of factors, including age at diagnosis, medical intervention, the patient’s overall constitution, and the specific mutation that the individual possesses. The following is a glimpse into Leslie’s life written by Sean’s mother, Katrina Young. It was written while the contest was ongoing.
“For those of you in the CF community or those of you who have seen her in action, I don't need to say anything else. For those of you who do not know what I am talking about, simply picture love, warmth, compassion, determination, courage and sheer grit rolled up into one tiny, dynamic, beautiful package - and that was Leslie. She was my friend, my mentor and my inspiration. Unfortunately we lost Leslie to CF last October. She was only 50.
The timing of this contest coming only a few months after her death hasn't escaped me. It is sadly ironic because it was "competition" that originally brought us together. Leslie started her team "Team C.aring F.riends" the same year that we started our team. When we moved down to San Diego, she loved the friendly competition it created between the two of us. She would always call to cheer or egg me on. Especially, if we were doing well, I could always expect her raspy, cheerful voice on the other end of the phone. She would call me her "girlie" and tell me how proud she was of Sean and our team. So as you can imagine, a part of me has had to steel myself for this year's Great Strides season (yes, Great Strides actually qualifies as a season in my house :). Great Strides will definitely not be the same without her voice or her presence.
Then this contest came along. And the more I think about it, the more I am sure all of this is Leslie's doing. It makes perfect sense. Leslie's health wouldn't allow her to compete with us anymore in the real world. This is her way to to make sure she could still cheer Sean on. And knowing her, she is up there negotiating and fundraising with God, as well. Even he can't resist her charms. I know this because God gave all of you to us.
As I alluded to yesterday, this contest is so much more than one boy or one vote or even one contest. It is Leslie's gift to me and our entire gift to Sean. It is about working together to make a really positive change in this world. The last time I saw Leslie, I knew that she was really sick and struggling. But Leslie would never admit that to anyone. (I doubt she even admitted it to herself.) But she did tell me that the 2011 walk would be her last. While she wanted to end on a good note and concentrate on her health, it was a hard decision for her to make and she made repeated references to wanting to "pass the torch." I knew what she was referring to, but of course, I was too chicken to accept her heartbreaking request. Maria Olsen (who works for the CFF) was sitting next to Leslie at the time; she and I told her that "her torch" belonged to her and it or she wasn't going anywhere. But at the end, we finally relented (I told you that Leslie was persistent). We looked Leslie in the eye and said that she didn't have to worry about passing on her torch because it had already been passed. She passed it to all of us. All of you who have walked with us, donated to a CF fundraiser and/or are considering supporting our efforts are the new beneficiaries of Leslie's legacy.
What makes this contest so special is that it is about giving hope to Sean and 30,000 others currently living with CF. It is also a way to honor Leslie and all those who have bravely fought this disease. Most of all, it has given all of us a forum to spread awareness, knowledge and compassion about a very curable disease. Leslie always said, "Believe anything is possible." Please know that we have the luxury of believing because of people like you. I know that we will find a cure for CF one day. We are definitely closer to a cure than we were on February 9th when this contest started. And we owe all of that to your votes, email, prayers, wishes and kind words. No matter what happens on Wednesday when they announce the winner, we have already won. We might have lost Leslie before her time. But we will save hundreds of thousands of others because of our combined efforts. Thank you for voting. Thank you for your sharing the past two weeks with us. Thank you for believing.”
For more information about cystic fibrosis, click on this link.
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