Our journey and involvement with fundraising for EFTX begins with our sweet daughter, Julia, who started exhibiting symptoms of epilepsy when she was 18 months old. She would briefly go limp in her left extremities (arms and legs) and appear to stumble or fall. These short episodes would last only seconds but given their frequency it caused greater concern than perhaps an overly clumsy toddler. After several tests over the course of a year (multiple EEGs, EKG, cat scan, MRI, spinal tap, genetic testing, blood testing, etc.) we still had no diagnosis and were treating for a non-specific movement disorder as best we could.
In early 2021 at age four, a short sleep study seemed to capture characteristics of epilepsy which a subsequent 24-hour (turned 48-hour) sleep study proved correct. Additionally, Julia was diagnosed with a rare type of epilepsy called ESES - Electrical Status Epilepticus in Sleep. This condition produces a near continuous spike-wave discharge EEG pattern during non-REM sleep - Julia was seizing upwards of 90% during this time in her sleep. The most concerning element of ESES is the potential impact it can have on a child's cognitive development, in some cases cognitive regression can occur. Due to the nature of ESES occurring in sleep, children who experience difficulty in cognitive development can potentially be diagnosed with a learning disorder without knowing that an underlying condition may be contributing to their situation. As Julia has gotten older, we have observed cognitive and behavioral regression.
In early 2024 we sought treatment with the team at UTHealth/Memorial Hermann Children's and in October 2024 Julia underwent an invasive Stereo EEG (SEEG) followed in by a Laser Ablation (LITT) procedure to remove the suspected tissue from where her seizures were originating. While the laser ablation did yield some improvement via reduction in seizure frequency and severity, we were not able to achieve seizure freedom for Julia. Working with Julia’s team, we decided to pursue a Vagus Nerve Stimulator (VNS) as our next attempt to improve her quality of life. The stimulator was implanted and activated in February 2026 and we’re still working through the early stages of this therapy. Throughout every procedure, test, or trial – Julia has amazed us with her resilience on this journey.
Despite the challenges, we are blessed to have supportive family, friends, and medical providers helping us. In 2022, we knew we had to get involved and work to spread awareness and raise funds for those less fortunate than us. What started as a "pass the shoebox" fundraiser during our annual backyard crawfish boil in 2022 has now blossomed into a mission that drives us year-round. Since early 2022, Team Julia and our generous family, friends, partners, and supporters have raised over $175,000 for EFTX. Please join us in raising money for this worthiest of causes. EFTX needs all our help to continue providing educational resources, youth camps, and free community clinics for those in need of our help the most.
Thank you for any donations you can make, and we look forward to seeing everyone at the Houston Zoo on April 25th!
With love,
Team Julia (Julia, Tony, Diana, and Victoria)