Julian is going to be 11 years old in November. He is empathetic, kind, and shy, but you would never know that from watching him play sports. He is tenacious with any kind of ball, especially basketball. He loves to sing; especially in the shower which is a blessing since he likes his privacy. However, his recently developed want for privacy stresses us out!
Julian had his first seizure when he was 4 months old. Dad was rocking him to sleep after a long hot day, and then suddenly he went quiet. His right arm started to rhythmically twitch. It looked like a muscle spasm, but he went from crying to being completely silent. He wouldn't respond and had spiked a fever, so we took him to the Emergency Room. He finally regained consciousness after 40 minutes and the doctors were stumped. They ordered a CT scan because doctors thought it might have been a stroke!
Imagine consenting to doctors putting your four month old baby under anesthesia, in order for him to be still enough to perform the scan. When the results game back negative, there was a huge sigh of relief. This was short lived because 5 days later he would have another status seizure that would send us to the ER once again. After many more seizures, starts and stops of medications, and different opinions from different doctors,
Julians' case was looked at by Dr. Sullivan at UCSF. Unfortunately, a year into the journey of seizures and stress, Dravet syndrome was confirmed by a DNA test. The diagnosis changed our lives forever. The daily stress of watching for seizures, and the increased possibility of SUDEP (Sudden Unexplained Death in Epilepsy) during sleep is always on our minds.
We are so thankful for the Dravet Syndrome Foundation for all of the work it does raising awareness, raising money for research, and providing family assistance. We are so hopeful that the new genetic research is close to a breakthrough for our kiddos. Thank you to the incredible community of DSF employees and volunteers that make everything happen, and thank YOU for your support for this organization.
