The Necastro family’s epilepsy journey began in 2019 when Noah was eight years old. They immediately learned of our programs and events from their neurologist, and it quickly became a journey filled with support and education.
The support came from joining family programs like the annual Walk, Parent Connect Groups, and the Shining Stars program. The education from monthly webinars covering topics like diet and physical health, epilepsy in school, and stress management.
“The webinar that has been most helpful to us was about seizure alert devices. We learned all about different devices, how they work, and which are most accurate and FDA approved,” says Noah’s mom Lisa.
Most of Noah’s seizures are focal seizures that happen every day, causing him to “zone out” and lose awareness of his surroundings. However, he’s also had six full-body tonic-clonic seizures since his diagnosis.
“We are currently using the Empatica Embrace 2 watch that Noah wears at bedtime. It has been so helpful in giving us peace of mind that we will be alerted when he has a nighttime seizure. We were never able to get a good night’s sleep until we had the watch,” says Lisa.
Feeling secure in this new world is important for Lisa and her husband Brian. Epilepsy has only been part of their life for two and a half years, but they’re already thinking about and preparing Noah for success as he grows.
“Living a “normal” life has been pretty easy at Noah’s age so far, but as he grows, it will become much more challenging. We worry about when he wants more independence and to spend more time with friends. We are concerned about when he is at driving age. Everything that is part of growing up will be another challenge for us to face as a family,” says his dad Brian.
As these changes come, the Necastro’s will have a network of friends and supporters to help. Adults and youth who have already navigated the challenges they find themselves facing.
“I join Parent Connect Groups because they are so therapeutic for me. The connect groups are the only place that I feel completely understood as a parent of a child with epilepsy. It is comforting sharing stories and useful information with others who have also witnessed seizures and everything else that goes along with epilepsy. I really look forward to making these connections with other parents every month,” says Lisa.
Noah is already feeling confident in what the future holds for him. He’s embraced this new aspect of his life and points to those around him as a big reason for his outlook.
“One thing I’m proud of is feeling like I am overcoming epilepsy — with all the support I have gained along the way has made that possible for me. Teachers, friends, and family have been my ticket out of the stress and the worry. If there was one thing I have learned from my journey, it is that I am not alone and I never have to be,” says Noah.
This group, which will continue to grow with the addition of new friends, are there to help him work towards and achieve his goals in life. His parents, and sister Lilah, will of course be the strongest and most consistent supporters there for him.
“Our hopes are for Noah to be able to follow his dreams. He is so intellectual and imaginative and he has huge aspirations. So, Brian and I, as parents, want to help enable him and encourage him that he can do anything,” says Lisa.
What are these aspirations?
“I like to write and read stories. To imagine I am the character, just to imagine what it would be like to be them. I also like listening to music, mostly new. Sometimes I’ll just start playing piano and create a song. In general, I just like creating things. Whether it’s making a video, writing a story, or a song,” says Noah.