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Editor’s note: Submitted to Ladybud by Meghan and Brian Wilson
Sabina Rose was just 15 months old. She was a beautiful baby, a sweet Jersey girl who loved her family, especially her new baby brother Rocco. Sabina loved to dance and had a giggle that her parents found mesmerizing.
Sabina suffered from a devastating form of epilepsy called Dravet Syndrome and took multiple FDA approved anti-epileptic drugs every day to try to control her seizures. The drugs didn’t work very well.
Sabina’s parents, Paula and Phil, were desperate to get her medical marijuana – the high CBD strains that have proven to be very effective in treating pediatric epilepsy. They were lucky enough to live in New Jersey, a legal medical marijuana state, but they still had numerous hurdles to cross before this treatment would be legally available to Sabina.
First, they had to find a doctor registered with the New Jersey Medical Marijuana Program who would be willing to see and sign-off for such a young child. They found that doctor, but because he was not a pediatrician, the regulations also required them to have Sabina’s primary pediatrician write a letter of support. Lastly, they were required to find a psychiatrist who would also be willing to write a letter of support for the treatment. Paula and Phil would stop at nothing for Sabina and had finally fulfilled all of the requirements. Sabina’s medical marijuana application was en route to the NJ Department of Health early last week.
On November 27th, the day before Thanksgiving, Sabina suffered a generalized tonic clonic seizure. Her parents administered her prescription rescue meds at home to try to stop the seizure, and the paramedics administered even more. At the hospital, the Pediatric Intensive Care Unit doctors put Sabina in a medically-induced coma. It took 25 hours for the seizure to end. Sabina experienced severe brain damage and swelling as a result. She lost her battle against Dravet Syndrome on December 2nd.
Sabina’s medical marijuana application was still pending at the time of her passing.
Paula and Phil had reached out to us last summer when they started exploring this treatment option for Sabina. As the parents of a 2-year-old girl with Dravet Syndrome, we know all too well the fear of the next seizure and the desperation to find a medicine to make the seizures stop forever. We were eager to help them navigate the onerous system, and in the process we formed a new friendship.
Governor Christie continues to stall progress in the New Jersey Medical Marijuana Program, and continues to support the regulations that make access extremely difficult for children like Sabina and our daughter Vivian. When Brian said to Governor Christie in August, “Governor, please don’t let my daughter die,” it was not an attempt to grab headlines, but rather a desperate plea to save lives.
Editor’s note: To help Sabina’s family with expenses, please visit their fundraising page.