Callie had her first seizure when she was 8 months old, and since then has continued to have seizures every 6 weeks. At age 1 she was diagnosed with Epilepsy Seizure Disorder, and after genetic testing she was diagnosed with Dravet Syndrome. Dravet is a rare, catastrophic, lifelong form of epilepsy that is resistant to all current available drugs.
In 2014, with the help of her neurologist, we started Callie on a Ketogenic diet. The keto diet is extremely high fat, low carbohydrate, and low protein. Every meal is weighed on a scale- three times a day, and no cheating allowed! She has been on this diet for the past 3 years and in that time we have made great strides in managing her seizures.
Unfortunately, with the nature of Dravet Syndrome, there is no known cure. Unlike many children with seizure disorders, Callie will not outgrow this disease. In January 2017 we started a clinical trial in San Diego with the hopes of obtaining some seizure freedom. We’ve had really good success with this new trial medication called Fenfluramine, in conjunction with the Ketogenic diet and other medications. However, with the unpredictable and unstable nature of Dravet, Callie still has seizures. We have tried lots of remedies – from acupuncture to CBD oil, Chinese medicine and essential oils.
When Callie has a seizure, it usually lasts longer than 5-10 minutes and is considered life-threatening. If she does not receive rescue medication quickly, the seizure continues and we have to be taken by helicopter to UCLA. Callie’s seizure triggers include: heat (hot days), illness (with or without fever), over-stimulation, and exhaustion.
Initially, we started Callie's Cause as a way to raise money for UCLA Pediatric Neurology. In the last two years we’ve donated over $100K to them. We have also initiated Keto Baskets, something every child who starts the Ketogenic diet at UCLA gets. The Keto Basket is a cooler filled with some start-up goodies like pre-made food, tools that are helpful for the diet, and a food scale. Despite being an ER nurse, I was so overwhelmed in the beginning by the difficulty of preparing food for this diet for Callie, so my goal is to help relieve some of the stress and financial burden for families just starting out on this journey.
Last year, we decided to use the majority of funds raised by Callie's Cause to serve more than just UCLA patients, extending our reach to families and children all over the world. We have provided funding for clinical trials, helped families with hotel stays and expenses, and provided financial assistance so that children with epilepsy can attend specialized camps.
Although there is currently no cure available for Dravet Syndrome, our mission is to support families living with this devastating condition in any way that we can. We also aim to continue to provide funding to help support the research efforts that are underway, in an effort to gain more knowledge about the syndrome, and to increase the amount of treatment options available for our children. We hope to spread awareness about this disorder, to bring attention to a condition that affects children all over who are just like our Callie.