Francesca was born on a sweltering summer day in Georgia. She screamed a good fit with her first breaths, and her parents laughed and cried simultaneously at the sound. It was as if two fighting felines found themselves in the hospital room. After accepting her new cold and bright environment, she calmed and the whole world was at peace.
What followed was nearly 6 months of bliss for the family’s firstborn. Watching the World Cup with her daddy during late night feedings. Trips to the midwest and Baton Rouge to visit family. Developing an incredible, expressive personality and smiling at such a young age that some doubted the upturned corners of her lips were an intentional gesture but her parents knew the truth and basked in the warmth of her squishy expressions. Staying on the South Carolina beach, only a few months old, one tiny blob of a sweet girl staring into the distant horizon over the vast Atlantic.
A week before celebrating 6 months of life, she had a 15 minute seizure while her mother lovingly bathed her. 911, paramedics, ambulance ride, crying, blood work, screaming, ct scan, spinal tap, more screaming, and above all, fear of the unknown. All tests were normal. The new family returned home, scared and ignorant and naive. They were unaware of the future, which held events and life changes beyond their expectations, both horrible and marvelous.
Two weeks later, another 15 minute seizure, this time her father bathing her. Another ambulance ride, more tests, more doctors. Two weeks later, 25 minute seizure. Medications. 5 weeks later, 15 minute seizure. Only one week later, another seizure. But this one wouldn’t stop. The father looked into her vacant eyes and believed his child was dying before him as they waited to hear the ambulance sirens; waited for deliverance. Still seizing the whole drive to the hospital. Still seizing in the ER. Seizing so hard the medical staff could not administer medicine into her veins. The father looked away, but the mother stared in horror as they drilled into her baby’s shins to give medicine to stop the seizure. Anything to stop the seizures. Finally an IV was started and more medicine given and the hour-long seizure concluded, leaving an exhausted, drugged child and two panicked parents in its wake. After a sleepless night in the hospital, the 8-month old greets her grandparents — who drove across the country through the early morning hours — with her first tooth.
More of these incredibly long seizures would follow. Two so bad that she was induced into coma to stop the seizing. Around her first birthday, she started having myoclonics, “petit mals”, which look like very short electric shocks. Since that time, with few wonderful exceptions, she has had a seizure everyday. The meanings of “good days” and “bad days” quickly became relative. On bad days, there were hundreds of seizures. A good day was less than 30. Thirty seizures in one day felt like a triumph. Thirty seizures. One small girl.
Always doctors and hospitals and staying up late to read medical journals, looking up the technical terms and trying to grasp their meaning in the face of a computer in the dead of night. More tests, more negative results. Mother asks for a genetic test and is denied. Mother demands a genetic test which comes back positive. A gene mutation, a brain physically impaired. Dravet. Severe epilepsy. She will never grow out of her seizures and the mortality rate is sickening, but her struggles now have a name, which gives the parents a focus to their fight.
Through all this, she still had her personality and was cognitively developing very well. Development continued until she was prescribed Clonazepam (Klonopin), a psychoactive drug meant to control the errant electrical signals in her brain and her 4th of eventually 7 daily pharmaceuticals. It dulled her, made her seizures worse. But the doctors and the parents, so desperate to find seizure relief for the sweet child, and ignorant in their own respects, kept increasing the dosage. Then switched to Clobazam (Onfi), a similar yet more terrible drug, and increased and increased and increased and finally, finally, the mother saw what was happening. She had researched and searched and called other parents and called the doctors and called more doctors and she realized that these medications were more frightening than the seizures. The seizures would interrupt life for a few hours or days, but only temporarily; the medications had taken their daughter’s personality and altered her brain. She could barely walk. She could barely swallow liquids and pureed foods. All her words faded, her smiles less frequent. Their world was broken and the parents mourned for their lost child who was still living.
But mourning is not giving up. They began reducing her medicine and saw improvements. The mother pressed on, learning all she could of the brain and seizures and then the whole body. Other parents helped immensely. The mother’s stubbornness proved invaluable in this fight. Diet changes. The mother had asked for the ketogenic diet before any meds, but the docs poo-poo’d the idea. Now she demanded it. Gluten-free, dairy-free, organic, GAPS, Specific Carbohydrates. The myoclonics continued but the large seizures ceased. One months, two months, three months, don’t say anything or you’ll jinx it, 6 months, 7 months, the father who doubted the strategy is all-in now, 11 months, 1 year. For 13 months, no convulsive seizures, even as medicine reduced. You can fight seizures with food and it is a powerful tool. The improvements continue, but food isn’t enough against such a devastating seizure disorder.
Enter cannabis. Immediate cognitive improvement. Immediate seizure improvements. Family commenting how great she looks and how she’s making eye contact and engaging in play again. A plant, outlawed in so many places, is healing her brain and resurrecting the little girl from years ago. As the pharmaceuticals were further weaned, she was able to swallow and walk again. She would open the fridge and ask for food, taking bites of whole pieces, chewing carefully each precious bite. No more drooling, less myoclonics, shorter convulsives.
As her brain heals, she heals. As she heals, the family heals.
It’s emotionally difficult to imagine how different Franny’s life would be if cannabis was an option from the very beginning. And though we can never go back to change the past for our daughter, we can help change the future for other children and families yet to come.