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Bruno Stillo- Dravet Syndrome
jennifer kaczmarek
Mar 9, 2016
Sharing my latest post of my time spent with Bruno Stillo. I first met Bruno in August of 2014. He lives in Miami, FL, and is four years old. My work, "WEED: The Story of Charlotte's Tangled Web", continues to follow the lives of those fighting for the right to have the choice to choose cannabis as medicine in the state of Florida. This visit with Bruno took an unexpected turn. This post truly gives you a peak into how fragile and unpredictible their life is; life with Dravet Syndrome.

Continuing with my effort to do what I can to help avocate for those suffering in this matter, it is important to go out and share this work with others. I stand firm in my belief that photography is powerful. It is important for others to see the reality that these families are living. Yesterday, Anneleise Clark, Christiana Clark's mother and I, held our first round of talks together. Together she and I bring a combination of information and visuals for those that may not know anything about the true realities and issues. Anneliese shared information from her Ted Talk about her daughter Christina, and how our laws got to be be the way they are.

Fighting for the right of those of all ages, she also holds dear the fight for all children. Anneliese along with Jacel, Bruno's mom, are members of CannaMoms, a group of mother's fighting for the rights of all critically ill children.

We were thankful for the wonderful crowd and the positive feedback. It was great to see a member of law enforcement on our side. Big thank you to Palm Coast Rotary for the invitation.

Rotary is a global network of community volunteers who provide humanitarian services and encourage high ethical standards in all vocations. They help build good will and peace in the world.

At the end of the talk, the Rotary awarded both Anneliese and I each a "Service Above Self" certificate of a donation made by the Rotary in both our names that will each go to cover the cost of 6 children's immunizations against polio. That really made our day.

Here is Bruno's post on Taking Focus.

Jennifer Kaczmarek

American portrait and documentary photographer.
Website via Visura

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