07/27/2016
A work in progress. I turned yesterday's sadness into action and began writing our mission statement...
On January 26, 2014, a journey began. A journey toward the awareness and prevention of encephalitis. Encephalitis, a term I had only heard used as a disease brought on by mosquitoes, is now my mission to prevent. Something About Ben is an organization dedicated to my son Benjamin Diamond. Ben, woke up one morning with mild flulike symptoms, and within three hours, encephalitis took over Ben like a freight train. Undiagnosed, we sat and watched and listened, and answered questions and ran every test in protocol. Nothing made sense about Ben's condition. Minutes turned into hours, hours turned into days and by day five, Ben's brain had herniated. Something About Ben was born the day Ben passed. On the eve of what we knew was going to be our last night with Ben, our family held each other hand-in-hand with Ben, and discussed our New Mission. An adventure, a goal, and a life's dedication toward hope of never having a child be taken because of this detrimental disease. Encephalitis, very simply means "swelling of the brain." It can be brought on by primary and secondary viruses and bacteria. While we know of no cure, we do know of early intervention that can change the course and slow the effects of encephalitis. And we will work toward raising funds for the professionals who are researching the disease. And what we plan to start doing locally, is integrate a course of knowledge of recognition and treatment of encephalitis symptoms to local physicians' protocol. Encephalitis does not have to be fatal. We are going to dedicate every dollar earned to ensure that children will not lose their lives to encephalitis.
..Something about Ben. Ben lit up a room. He touched the life of everyone who loved him in such a personal and and unique way. You couldn't help but say to yourself, 'there's just something about Ben. He's so precious. His smile is majestic. His eyes are filled with such love and purpose. His face with so much character, you couldn't help but laugh at him and with him.' You would just look and stare at him and feel something so magical. We used to sit and wonder why he was so special. And while being faced with the worst tragedy and heartbreak a person could ever imagine, when we were approached by the Gift of Life, the Pennsylvania chapter of the national organization Donate Life, we knew why there was something about Ben. Without hesitation, I knew as a mom, and I knew that when Jake, Ben's big brother, could understand, that Ben would want his organs and tissue donated to save snd preserve lives, and affect others in a such a way, that is bigger than we could ever hope for. And that's how the journey began. This is a journey about hope. Hope that with our hard work and dedication, we will see a decline in the detriment of encephalitis. Hope that during the most horrific loss of your life, you see purpose and meaning and you fight for a legacy for the love that you think you lost but didn't. It just changed. It became greater. Hope that you can see beyond tragedy, and turn anger and heartbreak into action and bring love to life. Hope to take away the fear and understand the bravery and selflessness of donating your own and your loved ones' organs in the face of tragedy. And lastly, hope of knowing how love changes you and knowing exactly what love is because of what Ben brought into our lives. Hope. No matter what it is that you're faced with, Ben's legacy is to touch peoples lives, hearts and souls and to always feel that there is a way to bring peace and love into your own life.
With much love to all of you who love and support us and our journey. And so it begins…
Susan, Ben's Momma
