Bruno's Story

Bruno Andres Stillo was born on June 14, 2011. He suffers from Dravet Syndrome, the chronic form of epilepsy that unfortunately there is no cure for. His first seizure was at 3 1/2 months old. Under the age of one, he was already taking as many as 5 medications 3 times a day. He cries every time he takes them, yet always smile when he’s done. His seizures vary in length, sometimes lasting 5 minutes or more (prolonged seizure) leading to status epilepticus which could last up to 30 minutes. We’ve been blessed he has not experienced induced coma as it is common when Dravet patients go through status seizures. Under the age of 1, Bruno would experience seizures if he had a fever as low as 99.3 and if other illness or viruses were present. Bruno can’t catch a cold, he can’t be exposed to heat, catch too much sunlight in the backseat while he is riding in the car or can’t be exposed to fluorescent lights for long periods of time. In fact, if any of this occurs, this would lead to either minor or sometimes potentially suffering life-threatening major seizures resulting in a prolonged hospital stay. His motor skills have not progressed to the point where they typically should be at his age and he is unable to hold himself up without falling or even hold his head up while sitting. As of now in 2015, he is unable to crawl on his own. He is currently receiving developmental, physical, occupational, and feeding therapy. We moved from NJ to Miami into our families two bedroom one bathroom home for support two year ago. The kids and I share one of those bedrooms rooms. Every night I sleep holding Bruno’s hands in case he seizes in the middle of the night. The other main reason for the move was to be closer to the Brain Institute at Miami Children’s Hospital which has a world renowned Dravet clinic and pediatric Neurologist. In December 2014, Bruno and I traveled to Colorado to start the process of obtaining our medical marijuana license. Bruno tried his first dose of CBD while in Colorado. It couldn’t have come at a better time since he had just been diagnosed with DRUG INDUCED LUPUS! At the time of his diagnosis with Lupus he needed to be removed from one of the anti-epileptic drugs he had been taking since he was 4 months old. Taking the medical marijuana became crucial as withdrawal seizures were present due to the removal of this anti-epileptic medicine. Being a single mother I couldn’t stay as I needed to get back to my nine year old daughter Angelene so it was only helpful temporarily. After returning home for a time, Bruno and I and 3 other moms were offered to come out to stay in California and try another type of medical marijuana that contained all parts of the plant including the critical component THC. What a blessing this was. Bruno for the first time at 3 years old experienced a seizure free day with the use of just his medical cannabis medication. No emergency medication was given during our time in California which was unheard of in Bruno’s case. We are now back in Florida and Bruno has regressed tremendously, He is back to not being able to hold his body up at all again. Bruno weighs 35 pounds and is 42″ long and has no body control. Carrying him and lifting him has caused me to have two herniated disks in addition to chronic arthritis in my knee. Bruno is outgrowing his car seat and we are in desperate need of a wheelchair van. I’m restricted from carrying him yet I’m the only caretaker my kids have. His medical equipment and expenses have become a burden and unfortunately I can’t teach or work at all as I need to care for Bruno. I pray one day Bruno can walk, understand the world around him and just enjoy his childhood. Like other families whose children suffer from this debilitating syndrome we are praying for a miracle, waiting for the day he’ll sit up unassisted, walk, talk and just enjoy his childhood like any other boy. A seizure free happy life for our children – a cure for Dravet Syndrome!