Paloma aka “Birdy” was born a healthy, perfect baby in the summer of 2013. Her parents chose the name Paloma, meaning dove as a symbol for peace. However, her short life has been anything but peaceful. At five months old her mother picked her up from her bassinet first thing in the morning, just as she had every other morning. This time she knew something was terribly wrong. Paloma’s little body was limp and her eyes were far away, unable to focus. At first it didn’t register with her mother what was happening. She quickly realized it was a seizure when her little limbs began to twitch back and forth rhythmically. She panicked and screamed as she called 911 thinking Paloma might be dying.
At the emergency room when the EEG showed no signs of a seizure, the neurologist suggested that Paloma must have been asleep and the so called seizure activity must have been normal baby movements. Within the next week everyone had a story for Paloma’s mother about how their baby also had a random seizure and never had another one. Her mother was relieved that maybe it was a onetime occurrence and didn’t give it much thought more seizures. But two weeks later another seizure occurred, this one longer and scarier. This time the neurologist acknowledged the seizure and placed her on anti-seizure medication. The medicine turned Paloma into a sleepy, dazed version of her former happy self. Despite the medicines the seizures continued. They got longer and harder to stop. Every seizure required powerful drugs to stop them. Calling 911 was now a normal occurrence in their house.
Her mother scoured the internet and read every single thing she could about seizures in infants. The doctors kept assuring her mother that because Paloma was developmentally normal the seizures were something she would outgrow. None of the epilepsy literature her mother read seamed to describe what was going on with Paloma until she came across Dravet Syndrome. Her heart sank when she read the description of the syndrome. Words like catastrophic and needing lifelong care were used. She knew instantly this is what Paloma had. When her mother brought Dravet Syndrome up as a possibility the doctor said Paloma did not have the characteristics and continued to up the medicine levels after every seizure. Right before Paloma’s first birthday that same doctor called her mother and said nonchalantly, “Well it appears that she was positive for Dravet after all.” All her mother could say at that point was, “I already know.” Her mother then vowed to research and find the best course of treatment for Paloma rather than letting the doctors dictate every decision. She soon stumbled upon the world of cannabis treatment for seizures in children. She recalled seeing a clip from the Sanjay Gupta “Weed” documentary a couple of years ago. She remembered thinking as she watched it how terrible for that family to have to live like that. She couldn’t imagine. Little did she know that it would soon be her own reality. Reading about cannabis oil was one of the few rays of hope her mother could find about Dravet Syndrome.
Paloma’s father is currently serving in the military and her parents put together a case stating that Paloma was not getting adequate medical care where they were stationed. They hoped to get sent somewhere were cannabis was an option. They were advised against asking the military to send them somewhere where cannabis oil was legal. They were told it would instantly be denied. So instead they made a case asking to be sent somewhere with a cooler climate because of the heat trigger for seizures and a doctor who specializes in Dravet syndrome. They hoped for Colorado. Instead they were given an assignment to Utah. Upon receiving orders her mother immediately searched to find out if cannabis was a legal option for treating Paloma and she was surprised to find that it had indeed recently been passed thanks to a group of fearless mothers in her same situation. As of this week she has been approved to start cannabis oil as a treatment. Like many children with Dravet Syndrome Paloma is resilient, funny and full of life. After particularly long seizures it takes her a good week to get over the effects of all the medicines. But being the little warrior that she is, she always fights hard to get back to her normal self. Her parents don’t know what her future holds so they hang on to every minute of every day that they are given with her as if it’s their last.