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The Gift of a 'Rare' Child

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I never appreciated Father's Day until I became a father. And this June 15th, I will witness my son endure an arduous and painful bandage change, a process that I have witnessed almost every day for almost 7 years, including every Father's Day.

My name is Alex Silver. My older child -- Jackson -- was born six and a half years ago with a rare genetic disorder called Epidermolysis Bullosa (EB). If you have not heard of it, you are not alone. My wife and I hadn't either before Jackson was born. It is a disorder in which a child is born without the "glue" that holds his or her layers of skin together. Soon after Jackson first received this diagnosis, I became a student of the disease and threw myself into learning all that I could about the effects of his condition. Imagine going through life with your skin tearing off your body from the slightest touch -- from a gentle hug or an innocent fall on the playground. Imagine the scarring and disfigurement fusing your fingers and toes together, sealing your throat shut and your eyes closed. Imagine the pain of an aggressive skin cancer that many people with severe EB succumb to in early adulthood. This was the life Jackson was going to have.

Or was it?

Over my dead body was my son going to suffer like this without my putting up a fight that I didn't know that I was capable of waging. Soon after Jackson was born, we created the Jackson Gabriel Silver Foundation to fund research aimed at advancing treatments and finding a cure for EB. As a rare disease, EB treatments, though medically and commercially viable, were languishing. JGSF was created to change this and to give to my son and the thousands of other children like him the chance at good and pain-free lives. This journey has brought me to testify in front of the US Senate, lecture at the FDA, join a National Institute of Health Advisory panel, speak at pharmaceutical companies and to create JGSF (while working full time), which raises over $1 million a year for EB research. If you asked me if I were capable of this before Jackson came into this world, I don't think that I would have said yes.

It is my love for him and my hope for all of the children living with EB that have given me the strength to push beyond my perceived boundaries. I refused then, and still do, the notion that I can't give my son a good life. The first work JGSF ever funded is currently being developed by a large pharmaceutical company as a life-changing treatment for those with EB. Another area of early stage JGSF-funded research is showing promise for curing EB as well as other rare diseases. What started with my amazing boy is leading to potential treatments for thousands of people, if not more.

On this Father's Day, I want to thank Jackson and his sister Michaela for bringing out my best. I celebrate you for you are the loves of my life and my daily inspiration to keep fighting. I have become a stronger and better person because of your presence in my life. And to the other parents out there reading this, I want to share a thought and ask for your help. When your children are faced with a seemingly impossible situation, know that you can effect change for them. Just take it one step at a time. It is not easy, but it is possible. JGSF started at our kitchen table and I never imagined that it would grow to what it is today. I also want to ask for your help. While we have made significant progress, we have so much left to do for Jackson and others suffering from EB. JGSF is currently funding a cutting-edge and safer form of gene therapy at the University of Minnesota, which could be a technology that applies to many other genetic disorders. While over $1 million in support has advanced this project, we have at least another $1 million in support to move it forward from here. You can learn about our efforts and how to help here.

Happy Father's Day.