Thriving with Epilepsy: Jacob Milz

Jacob Milz experienced his first seizure at just 17 months old. Now seven, he has already grown into a powerful advocate for the epilepsy community. As an active member of the Shining Star program, Jacob has turned his elementary school into a Seizure Smart School, and with his service dog Bailey at his side he never hesitates to educate anyone and everyone about his seizures. Jacob has now been seizure free for three years and is looking forward to a successful year in the 1st grade and going back to Day Camp next summer.  


Jacob Milz's Journey with Epilepsy: 


Jacob Milz had his first seizure at just 17 months old. Caused by a fever, it came as no surprise to his parents as his dad’s side of the family had a history of fever-induced (febrile) seizures. It wasn’t until Jacob started developing non-fever related seizures at two-and-a-half years old that his parents learned through genetic testing he had a SCN1A mutation that is part of the Dravet Spectrum.

After this diagnosis, Jacob and his mother Anna became involved with EFMN. They started out by attending a Parent Connect meeting in hopes of receiving support and assistance from other parents who have children with epilepsy.

“We found this to be very helpful as it can feel like you are very alone. This journey can be difficult and overwhelming as you are learning how to help your child find the correct medications and assemble the necessary medical team. We learned many helpful tips and tricks from other parents even though their journey may have been different,” said Anna.

As Jacob grew older, he joined EFMN’s Shining Star program for children with epilepsy and attended his first group event at Como Zoo. Meeting other children with epilepsy was an eye-opening moment for Jacob: he realized he wasn’t alone, and that his parents weren’t actually “torturing him by giving him medicine twice daily,” but that other kids had to take medicine as well.

Entering the 1st grade this year, Jacob and his family have taken advantage of EFMN’s Seizure Smart School program to help educate his teachers and peers about epilepsy and seizures. Having EFMN staff members teach Jacob’s school about seizure response has provided peace-of-mind for his parents, who can rest easy knowing he spends his school day surrounded by people who know what to do if he has a seizure. The program has also helped Jacob feel empowered to talk about his seizures and, as a result, gives him a feeling of acceptance amongst his classmates.

This summer Jacob attended the first ever EFMN-hosted Day Camp, where he was able to climb rock walls, ride horses, catch bugs, and go canoeing.
“It was wonderful as a parent to see the joy and excitement he had around going to camp. It is also so helpful to have a camp where you don’t have to worry if the leaders will know how to care for him if he has a seizure. It was such a blessing for Jacob and our family,” said Anna.

Jacob has now been seizure-free for three years and continues to be a powerful advocate with the help of his service dog Bailey. Not only has Bailey been great support for Jacob, but having a service dog means Jacob is open to telling anyone and everyone about his seizures.

“We feel that raising awareness of epilepsy helps to ‘normalize’ it, and also helps others understand how common epilepsy is. The support of friends, family, and organizations like EFMN have truly helped create a path of light for us and helped us through some difficult times. We feel quite strongly that we would like to do the same to help other families,” said Anna.

Seizure Smart Schools

Is your school seizure smart? Find out here, and request a training for your school today!





Editor's Note: A donation made in Jacob's name was mistakenly listed in our recent annual report as a memorial gift. We apologize for this error and are happy that Jacob is thriving.

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