On the evening of September 27, 2012, Kate O’Connor attended the 1st Annual “RARE Tribute to Champions of Hope” benefit at the Balboa Bay Club & Resort in Newport Beach, CA. The event raised funds and awareness for rare and genetic diseases that impact 1 in 10 Americans and 350 million people globally.
But, the event did more than that; it raised a level of rare disease awareness to those who are also unaware of or unaffected themselves by rare disease. Based on Kate’s and many similar reactions, it gives Global Genes continued hope about their efforts for creating rare disease awareness.
Through hope and working together, we do have the ability to change life for the better. – Kate O’Connor
Read this amazingly insightful, and well written english paper by Kate.
English 8A, period 1
7 October 2012
Life is something that most people take for granted. When you are healthy and happy, it is easy to dismiss the true meaning of what our lives are all about. It isn’t until something is abruptly ripped from you that you begin to cherish every moment you live and every breath you take. Around the world, life is viewed through many different perspectives. After one night this September, my view of the true meaning of life has changed entirely.
My family was invited to attend an event in support of our friend’s non-profit organization. The non-profit is called Global Genes | The RARE Project. Other than knowing that they help and support those with rare diseases, I didn’t know much about it or what the night had in store. I was told that they were going to be honoring some scientists and doctors for the research they had done, and maybe having one or two other speakers as well. Excited and delighted, I could not wait to get dressed up and to hang out with a few of my good friends from soccer, and maybe see some of the celebrity singers or actors that were going to be there.
When we first arrived, I noticed how elegantly everyone was dressed and how beautiful the decorations were. The color blue represents awareness for rare diseases. Everything around us sparkled and glittered in different shades of blue. Also, there was even a blue carpet to walk down after you checked in. We were greeted by the media and photographers, and we were asked to wear a blue ribbon to symbolize our support. There was an electric energy of hope and optimism in the air and I immediately knew that this was going to be much more than I expected, and that it was going to be a very special night.
When we began to walk around, I noticed more and more people in wheelchairs and I realized that most of them were children who were fighting their own battles against rare disease. They were all so young, but already unable to even walk on their own. As the seriousness of their conditions hit me, I thought of how lucky I am and how I wished there was more I could do. Deep in thought, I turned and was greeted by a girl named Courtney. Courtney was in a wheelchair and had beautiful, long blonde hair. She is in high school and was talking about how excited she was for her homecoming dance that was coming up. I learned that Courtney helped design a new park in San Clemente. The park is wheelchair accessible and is named Courtney’s Sandcastle after her. Also, I learned that she is busy looking into different colleges and has hopes of attending Harvard University! Awed and amazed, I was so astonished by her drive and determination. Although she is small and not physically strong, she is still so full of life and has a huge and caring heart. Strong and driven, she showed me that it is possible to overcome adversity, and even if the odds are against you, that you need to keep fighting. In that moment, my view on life and what it truly means, was changed forever.
As we all headed into the ballroom and were being seated for dinner, I kept thinking about Courtney and wondered if I would have been able to have such a positive attitude if that were me. I quickly learned that she wasn’t alone in her fight against rare disease. Introductions were made and different people were being honored for their part in the fight. After each new person was introduced, we learned of one heartbreaking story after another. One example was a mom who had become very active in the fight for a cure for a disease that claimed the lives of her two boys. In the middle of her speech, she said, “I would give anything just to look into my sons’ eyes again…”. This comment really struck me and made me realize that we all need to cherish the life we are given and to make a difference while we can. The devastating stories continued, but at the same time, they all had messages of hope and inspiration.
On the drive home, I couldn’t help but think of all the moving stories I heard. Many people spoke that night, and every single story touched my heart. The messages were about strength, determination, and most of all, hope. As someone once said, “Hope is the only thing greater than fear” – unknown. I began to understand that the night was not really about the fancy dresses or the dazzling blue lights. It was not only about raising awareness for the many rare diseases that still have no cure, but also to remind everyone to live their lives to the fullest. In the magic of this moment and the magic of this night, I realized it truly is possible to overcome what may seem to be impossible.
Through hope and working together, we do have the ability to change life for the better. As Martin Luther King Jr. once said, “Our lives begin to end the day that we become silent about things that matter”. Hopefully, Courtney and the others know that they do matter and I want to thank them for showing me the magical meaning of life!