Andrea Miller longs for the day when she can go somewhere safely on her own.
After all, she is 37-years-old, and should be able to take her dog out for a walk, shop at a grocery store, or collect mail from the mailroom of her family’s apartment building in Milpitas without her parent’s supervision. But in the past few years, Andrea has had no choice — her parents are her lifeline.
That’s because at any given moment, Andrea’s brain can unexpectedly release a burst of electric activity that causes her to temporarily lose control over her muscles, behavior and consciousness — a phenomenon know as a seizure. If her parents are close by, they move any nearby people or objects out of Andrea’s way, and turn her on her side to make sure she doesn’t choke on her tongue or saliva. If her symptoms last longer than five minutes, they call 9-1-1, which is the protocol for handling seizures of that length.
Last year Andrea was diagnosis with Lennox-Gastaut Syndrome (LGS), a rare and severe form of epilepsy that affects 1 to 2% of all adults with the condition. Even with medication and an implant in Andrea’s chest and neck that can help regulate her seizures, the Millers never know when, where or how severe Andrea’s next seizure will be — and there are usually six per month. The unpredictability has Andrea’s father, Greg, and mother, Cathi, watching their daughter like a hawk, and Andrea herself looking for a way to maintain a sense of independence.
“I think its kind of like the social expectation of when you grow up, you’re supposed to move out on your own and no longer living with your parents,” Andrea said recently in an interview, while Greg and Cathi sit on either side of her. “I don’t really have that experience. I guess it kind of makes me feel like a toddler in an adult’s body.”
Fortunately, there are devices that can help. The Millers are looking to purchase an EpiMonitor, an FDA-cleared seizure monitoring app that connects to a medical watch. The watch can track Andrea’s vitals and send data to the app downloaded on her phone, which then alerts her of any impending seizures. If Andrea is alone somewhere, the device also notifies her parents and sends over her exact location so they can offer assistance or call first responders.
The current price for the EpiMonitor app and medical watch is $900, which is a financial strain for the Miller family as Andrea and Gregs’ income comes from disability checks. That’s where the Silicon Valley Independent Living Center (SVILC) comes in. The nonprofit organization provides services and resources to all persons with disabilities to help further their independence in Santa Clara County. According to U.S. Census data, 4.9% of people under 65 years old in Santa Clara County have a disability.
Staff are hoping to raise $15,000 from Wish Book to establish an Assistive Technology Fund that will be used to purchase the EpiMonitor. With the remaining money, SVILC plans to purchase similar assistive technology equipment for 10 to 15 families who have a member with a significant disability. “It’s definitely going to make a difference for many people,” said Christine Fitzgerald, the center’s Community Advocate.
SVILC already manages a free lending library of assistive technology tools for their clients to borrow, including adaptive cutting boards, keyboards and media players. However, the center doesn’t have high-tech resources for seizures, like an EpiMonitor or similar devices, according to Fitzgerald.
Finding the right tools to track and help Andrea’s condition has been a decades-long journey. As a child, Andrea experienced smaller seizures that affected her behavior. When Andrea was 18, she experienced her first major seizure. She suffered violent contractions all over her body and a loss of consciousness. A doctor diagnosed her with general epilepsy.
Andrea moved out of Greg and Cathi’s apartment afterwards to live with her partner, who would take meticulous notes on the timing and symptoms of her seizures. As the seizures became more aggressive and common overtime, doctors would eventually use her partner’s notes to narrow down Andrea’s diagnosis to LGS
“The more we learn, the more we worry, and the more scared we all get,” Cathi said.
Those with LGS can live into their 50s or 60s, but often require lifelong care. They have an increased risk of dying prematurely due to events like seizures, injuries, accidents, or Sudden Unexpected Death in Epilepsy, according to the LGS Foundation. There is no cure for the disease.
When Andrea’s partner passed away in 2022, Andrea moved back in with her parents. From then on her parents were constantly by her side, monitoring her every movement and seizures.
“Imagine the challenge of trying to live independently when you got two parents hovering all of the time,” Greg said. “If we back off, sometimes that means there’s a risk of Andrea having a very severe seizure and us not being there. It’s a balancing act.”
If Greg and Cathi have to be away from Andrea, they’ll send texts or call her every few minutes, waiting for a response to prove she’s fine. Even helping Andrea at home can be challenging. Greg has multiple scoliosis and a spinal cord injury that confines him to an electric wheelchair. If Cathi is away and Andrea has a seizure in an area his chair can’t reach, he’ll need to call for help.
That’s why an EpiMonitor can provide some breathing room for the family, Greg said. With the devices, Greg and Cathi will know how to help Andrea when she is having a seizure, without being in the same place. They can focus on doing other activities, while Andrea is free to take that walk, collect their mail, or do whatever she wants by herself.
“I have a feeling in my gut that I will never be able to live on my own,” she said. “but at least with this device, I know that if I do go down, there will be somebody there to be able to offer the help necessary. That’s a very hopeful feeling.”
THE WISH BOOK SERIES
Wish Book is a 501(c)(3) nonprofit organization operated by The Mercury News. Since 1983, Wish Book has been producing series of stories during the holiday season that highlight the wishes of those in need and invite readers to help fulfill them.
WISH
Donations will help Silicon Valley Independent Living Center establish an Assistive Technology Fund that will be used to purchase an EpiMonitor for Andrea as well as similar assistive technology equipment for 10 to 15 families who have a member with a significant disability. Goal: $15,000
HOW TO GIVE
Donate at wishbook.mercurynews.com/donate or mail in this form.
ONLINE EXTRA
Read other Wish Book stories, view photos and video at wishbook.mercurynews.com
This post was originally published on here
