I met Nicole Boice, the founder of Global Genes over two and a half years ago through an interview for a new series that we were creating on rare diseases. I was desperately searching for a name for the disease that was quickly accelerating and debilitating my daughter. Nicole had recently started a nonprofit for patients/families fighting rare & genetic diseases. Her enthusiasm for pulling the rare disease community together to help patient advocates was deeply aligned with our initiative on Behind the Mystery :Rare & Genetic series .

This past week I had a chance to attend my first patient summit and Gala as a media partner. Half way through the week I realized that I was not just working anymore. I was experiencing the community that will be an integral part of my mission as a mother of a child with a rare disease. This is my daughter. (Editor’s note: This is my mom.)

Here is my take away.

  • As a caregiver I need to start with myself. I know this. I do segments on this all the time on our show The Balancing Act. But I didn’t really hear this or understand that I was in the equation of rare disease. When you are a mother of a sick child, your life revolves around your child’s every need. You drop everything. You run, no questions asked to help and support and to be a warrior. I just separated from myself and my needs to the point of non existence. This summit made me see that if I am not in the game, their is no game. Be responsible for my own caregiving.
  • Community is a beautiful thing. I watched break-off groups congregate in the hallways and share their stories , with tears and laughter they gave support and advice. I stood on the sidelines as media until the last night at the Gala when I truly realized that I was being supported by a beautiful woman named Carrie Ostrea who hugged me with such love that I melted. Everyone needs support, no matter how strong we think we are.
  • There are a lot of opinions and you have to be open to listening and understanding and changing and moving forward. When I started our programming it was to find a diagnoses for my daughter and to help other people who were undiagnosed to find community, Most of the people that I have spoken with were grateful for our programming and for the information that our series put on national television. I always said that if I knew what my daughter had I would put my efforts in to that. Now I know too much. Too many people with children dying and no cures. I’m right where I belong. Supporting and educating and raising awareness on a national level on all rare diseases. Partnering with a dynamic group at Global Genes.

 Carri Levy is the Senior Health Producer for National Morning Talk Shows, Behind the Mystery & The Balancing Act.

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