Bruno was born a healthy little boy weighting 6lbs 16oz on June 14, 2011, in NJ. His older sister, who was five years old at the time, was excited to have her baby brother home. We had visions of our two children playing together and illness was the last thing on our minds. At the age of 3 months, Bruno began to have violent seizures.
I was not prepared for this dramatic change that affected all of our lives.I had never been in an ambulance until the first time we had to rush little Bruno to the emergency room. After a series of tests including spinal tap, CAT scan, EEG, blood work and X-Rays, everything came back negative. The doctors were unable to identify a cause for the seizures. The seizures continued to increase in intensity and frequency to the extreme that some times Bruno would turn blue. I felt powerless as the tests kept coming back negative. When he turned 6 months old, he had a prolonged seizure lasting hours which caused him to be rushed him to trauma and Intensive Care Unit. The seizures were taking a toll on his little newborn body and the rest of the family. He was finally diagnosed with Dravet Syndrome, which I had never heard of. Dravet Syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures. Previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), it affects 1:15,700 individuals (Source: Dravet Syndrome foundation).
I immediately started researching so that I could learn how to care for my son. We found a Dravet clinic at The Brain Institute at Miami Children’s Hospital, which was a blessing, but there was so much to learn. When Bruno turned 1, our family relocated from New Jersey to Miami, so Bruno could seek help at Children’s Hospital. We were desperate for good news. The Children’s Hospital recommended a special ketogenic diet to help with his daily seizures along with a veterinarian drug used for epilepsy. During his use of cocktail medicines, he experienced many of the side effects these drugs cause including drug induced lupus, lethargy, low white count cells, including a major dental procedure causing all his teeth to be extracted and leaving him with 6 root canals at the young age of 4. These side effects left Bruno immobile as if in a vegetative state. It was devastating as a mother to observe his decline.
When Bruno was three years old, we took the first step to acquire his Medical Marijuana card. By that time, his seizures had increased to 300-400 a day, and he was taking about 12 prescription medications. These medications that were causing severe side effects were still not making an impact on the frequency and intensity of seizures.
In 2014, I testified at a hearing in Tallahassee for a low cbd medical marijuana bill being proposed for the State of Florida. The passing of this bill was a matter of life or death for my son and I was prepared to do what I had to. While testifying I met two other moms spreading the word as to why cannabis was needed by their children to improve their quality of life. We built a support group of advocating parents and that lead to the formation of Cannamoms.
In 2014, four of us were offered the opportunity to travel to California, visit a physician, and obtain our children’s medical marijuana card. We stayed in California for weeks leaving our loved ones home in Florida, while treating our children legally in California. The results proved that we had done the right thing and that we could not give up.
Medical marijuana is not an overnight miracle drug—it doesn’t show dramatic improvements immediately—but over time, Bruno’s seizure started decreasing. First night we tried a combination of cannabis oil he didn’t seize for that evening, it was a miracle for us. Within days his seizures decreased significantly. It was like having my son back in a way that I was afraid to believe was possible.
As Cannamoms, we never forgot our mission, and we had to leave the safety of a legal state and continue advocating for medical marijuana in Fl. As any desperate mother would, seeing positive side effects with an alternative medications, we continued medicating our children in Florida. We also continued sharing and evangelizing about the positive results we gained from using this medicine so Florida voters would support Medical marijuana.
From 2014 to present, His seizures have been dramatically reduced to only three to five a week. It’s a dream come true after living 300-400 seizures a day! My joy and hope from this victory has fueled my mission to make sure that other parents will not have to go through what I went through or even lose their children to seizures because the legislature fails to be responsive to the clear evidence of the healing power of Cannabis.
Just to demonstrate how life changing access to Cannabis has been for my son, I will share a personal story. For a long time, I wasn’t sure Bruno knew that I was his mother. The constant epileptic episodes left him unable to walk, talk, and not have a childhood. He couldn’t live without his helmet and he was unable to sit up on his own. Bruno couldn’t even sit on his high chair without me having to taping a pillow in front to prevent injuries from the amount of time his seizures would knock his head down to the table tray. All of that changed once he started using medical marijuana. Now that his seizures are down, he’s learning to crawl, walk on a treadmill and can even use an iPad. I am so happy for my son. Cannabis has given me hope that he can have a decent quality of life.
He is now a 5 year old little boy can actually sit up and play with his toys and notice his surroundings! He avoided having surgeries done and is now only taking two seizure medications and his cannabis oil! Under his doctors guidance, we are currently weaning him from one of those seizure medications.
Bruno got his first home delivery of cannabis earlier this year after the historic passage of Florida’s Amendment 2 Medical Marijuana amendment in November 2016. It was a huge relief because Bruno was finally a legal patient in the state of Florida, meaning he can continue using his cannabis oil legally! I am no longer risking arrest and prosecution by trying to keep my son alive.
I never thought in my life that instead of focusing on his special needs equipment, we would spend years fighting to get a medicine his doctor and I agreed on as necessary for his life.
As Cannamoms, we continue to advocate and share our stories because we feel this should have been the first option for our children, not the last resort. Medical Marijuana is actually a conservative option when compared to surgeries and harsh, life threatening side effects of prescription medications. We want to educate and help parents obtain the alternative medications the right way. We set up resources to provide assistance to families with sick children that can benefit from Cannabis treatment. Our objective is to help as we have been helped and give hope as we have been given hope.
DONATIONS CAN BE MADE TO:
PayPal: jacel24@hotmail.com
PayPal.me/prayfor bruno
