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April Loutrel

The bad: Julian had his first seizure when he was 4 months old. It was on one side of his body, and it lasted nearly 40 minutes. In the emergency room they did a CT scan and found no tumors, thank God. Days later, it happened again, back to the ER...MRI and 1 hour EEG. Did you know that they have to put a 4 month old to sleep in order for them to hold still for an MRI? I do. It sucks. Since then, Julian has been on Keppra, a second generation anti-convulsant drug: every 12 hours. When he has a seizure longer than 2 minutes, we have to use rescue medicine to stop it. Thanks to the amazing team at CPMC and UCSF Children's Hospital, we have done a 30 hour follow up EEG, and genetic testing to determine the Dravet Syndrome diagnosis. They have been amazing. Thank you to the nurses who helped contain a rowdy 18 month old to a room with wires glued to his head for a day and a half! Dravet Syndrome sucks. You don't grow out of it. It typically causes lots of kinds of seizures, and doesn't respond well to medications. Risk of SUDEP (sudden unexplained death related to epilepsy) is high. He could have a tonic-clonic (grand mal) seizure at any time, falling. Dan and I take turns sleeping with him every night to make sure that he is ok.

The good: Julian is developing well, meeting his developmental milestones, talking, running around! He loves his older brother. When he is on his daily Keppra (anti-convulsant medication), he is fairly seizure free. Only having one every few months, especially when he has a fever. Many other kids with Dravet have it much much worse, having seizures every day. We are lucky, and thankful every day.

The future: This disease is so rare. Only 1 in 20,000 to 40,000 kids have it. The number of kids that it affects is so small, the drug companies can't make money doing research on this. Dravet Syndrome Foundation is a non-profit dedicated to fundraising for research for better drugs and hopefully one day for a cure.

Please COME RUN with me!! Or donate to DSF in Julian's name. Any amount is welcomed! Thank you so much and thank you for taking the time to read this!!

Love April & Chip on behalf of Deb Dan Hugo & Julian

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