Little Girl with Dravet Syndrome Dies While Waiting for Cannabis

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Another little girl in the state of New York has passed away while waiting for safe access to cannabis. Anna Conte, a nine-year-old who suffered from Dravet Syndrome, passed away last week and was laid to rest yesterday.

Her mother, Wendy Conte, was a part of the movement to pass the New York State medical marijuana law, also called The Compassionate Care act. The Contes had previously traveled to Colorado to get on a waiting list for cannabis for Anna, but her plants will reportedly not be ready until October. The family was planning to move, at least in part, to ensure Anna would have access to cannabis.

Tragically for Anna and her family, the passage of the law was far too late to help her. Most estimates indicate it will be at least a year and a half before the program is set up and functional. In the meantime, there is little doubt that there will be more tragic stories like Anna’s coming out of New York.

anna4Her passing is particularly heartbreaking, as many cite the Conte family’s lobbying as one of the more powerful forces that helped turn the tide to support the new law in the Empire State. Wendy, Anna’s mother, repeatedly lobbied the state legislature and later spoke out to the governor about how the limited program was a good first step, but not enough. She is working with the Drug Policy alliance in their push now asking lawmakers to create an expedited process for those like Anna, with severe chronic conditions who can not wait.

Instead of placing blame or allowing their grief and despair to consume them, the Contes are turning this tragedy into the inspiration to make the world a better place, especially for children who are very sick.

The family shared her father’s eulogy on Facebook yesterday.

Anna Olivia Conte lived a life of 9 years in a way we all try to achieve. She had no angst or anger towards anybody, no jealousy, no greed; she never had any of those feelings. Only love. She loved everybody and she got it back in return. It spread through our family, then our village and town, then people throughout New York State, then other states and even other countries. And all she ever did was love like Anna.

She did not care about race or where you were from, if you were tall and skinny, or short and round, what religion or church, rich, poor, dirty or clean.

She didn’t even worry about a person’s past. She loved like Anna no matter who you were. Think about it for a moment;

If we could love like Anna what would our lives be like?

In my wildest dreams I never thought a 9 year old who is cognitively and mentally 18-24 months old would end up being my role model when I would be in my 50’s.

But, she is.

It isn’t a gift to love like Anna. We all have it inside. The gift is to be able to be that person without even trying. And she was.

I mean isn’t it what we all want in the end, to love and be loved back?

To love like Anna?

Anna’s struggle may be over, but it’s clear she will be remembered by many who loved her and who were deeply touched by her courage and her heart.  The bravery and love of Anna Conte and her entire family continues to inspire the community in the area, who came out yesterday to memorialize the beautiful little light gone out too soon. Paper lanterns were lit and released into the night sky as a way to remember the precious soul who brought so much beauty and joy to the lives of others, even when she was battling such a debilitating medical condition. May her family and all those who loved her find comfort in the fact that her light is still leading the way to a better future and will continue to inspire lawmakers to make the right choice for some time.

Read more coverage on the New York medical marijuana law on Ladybud here.


Photo Credit: The Conte family