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Today, August 21st, 2014, would have been Sabina Rose‘s second birthday. Born with Dravet Syndrome, a severe form of epilepsy, beautiful, sweet Sabina passed away on December 2, 2013. The most tragic thing about this little girl’s passing was that she was waiting for legal access to a high-CBD cannabis oil. She hadn’t responded well to FDA-approved anti-seizure medications, and her parents were desperately fighting to obtain the one medicine that represented a real hope for Sabina.
Because she lived in New Jersey, a medical cannabis state, it seemed reasonable to expect that little Sabina would receive the life-saving medication she so desperately needed. Unfortunately, the New Jersey program is rife with red tape and difficulties, especially for minor children in need of cannabis.
She had to see a specialist, get a letter from her pediatrician, and have her treatment reviewed by a psychologist before her application could be processed. Her parents, Paula Fiorino Joana and Philip Joana, did everything they could to get her through the process as quickly as possible, but the red tape lasted longer than their daughter’s battle. When she passed away last year, her application had been submitted to the state but was still pending.
The tragedy of their daughter’s unnecessary death has turned Sabina’s parents into activists, the kind of folks who aren’t afraid to call out one of the most powerful men in the state. Sabina’s memory and the love and light she brought to those she met lives on, and her parents would like everyone touched by her to take a moment today and remember that she should be celebrating her second birthday, surrounded by the people she loves.
Paula and Philip Joana have organized a small local gathering to celebrate what would have been Sabina’s second birthday. They are also asking for Sabina’s supporters who can’t make the trip to New Jersey to sing “Happy Birthday” to her today and to eat a piece of cake in celebration of her short but sweet life. You can comment about your personal celebration or leave a note for Sabina’s parents by joining the Facebook event here.
For previous Ladybud coverage of Sabina’s story, click here.
Photo Credit: The Joana family