Andrea Miller longs for the day when she will be able to go someplace safely on her personal.
In spite of everything, she is 37-years-old, and will have the ability to take her canine out for a stroll, store at a grocery retailer, or gather mail from the mailroom of her household’s condominium constructing in Milpitas with out her dad or mum’s supervision. However previously few years, Andrea has had no selection — her dad and mom are her lifeline.
That’s as a result of at any given second, Andrea’s mind can unexpectedly launch a burst of electrical exercise that causes her to briefly lose management over her muscle mass, conduct and consciousness — a phenomenon know as a seizure. If her dad and mom are shut by, they transfer any close by folks or objects out of Andrea’s method, and switch her on her aspect to verify she doesn’t choke on her tongue or saliva. If her signs last more than 5 minutes, they name 9-1-1, which is the protocol for dealing with seizures of that size.
Final yr Andrea was analysis with Lennox-Gastaut Syndrome (LGS), a uncommon and extreme type of epilepsy that impacts 1 to 2% of all adults with the situation. Even with treatment and an implant in Andrea’s chest and neck that may assist regulate her seizures, the Millers by no means know when, the place or how extreme Andrea’s subsequent seizure can be — and there are normally six per thirty days. The unpredictability has Andrea’s father, Greg, and mom, Cathi, watching their daughter like a hawk, and Andrea herself on the lookout for a approach to keep a way 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 stated just lately in an interview, whereas Greg and Cathi sit on both aspect 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.”
Luckily, there are units that may assist. The Millers wish to buy an EpiMonitor, an FDA-cleared seizure monitoring app that connects to a medical watch. The watch can observe Andrea’s vitals and ship information to the app downloaded on her telephone, which then alerts her of any impending seizures. If Andrea is alone someplace, the gadget additionally notifies her dad and mom and sends over her precise location to allow them to provide help or name first responders.
The present worth for the EpiMonitor app and medical watch is $900, which is a monetary pressure for the Miller household as Andrea and Gregs’ revenue comes from incapacity checks. That’s the place the Silicon Valley Unbiased Dwelling Middle (SVILC) is available in. The nonprofit group offers companies and sources to all individuals with disabilities to assist additional their independence in Santa Clara County. Based on U.S. Census information, 4.9% of individuals beneath 65 years outdated in Santa Clara County have a incapacity.
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Employees are hoping to boost $15,000 from Want Guide to ascertain an Assistive Know-how Fund that can be used to buy the EpiMonitor. With the remaining cash, SVILC plans to buy related assistive expertise tools for 10 to fifteen households who’ve a member with a major incapacity. “It’s definitely going to make a difference for many people,” stated Christine Fitzgerald, the middle’s Group Advocate.
SVILC already manages a free lending library of assistive expertise instruments for his or her shoppers to borrow, together with adaptive slicing boards, keyboards and media gamers. Nevertheless, the middle doesn’t have high-tech sources for seizures, like an EpiMonitor or related units, in accordance with Fitzgerald.
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Discovering the proper instruments to trace and assist Andrea’s situation has been a decades-long journey. As a baby, Andrea skilled smaller seizures that affected her conduct. When Andrea was 18, she skilled her first main seizure. She suffered violent contractions throughout her physique and a lack of consciousness. A physician recognized her with common epilepsy.
Andrea moved out of Greg and Cathi’s condominium afterwards to reside along with her companion, who would take meticulous notes on the timing and signs of her seizures. Because the seizures turned extra aggressive and customary extra time, medical doctors would ultimately use her companion’s notes to slim down Andrea’s analysis to LGS
“The more we learn, the more we worry, and the more scared we all get,” Cathi stated.
These with LGS can reside into their 50s or 60s, however typically require lifelong care. They’ve an elevated threat of dying prematurely attributable to occasions like seizures, accidents, accidents, or Sudden Sudden Dying in Epilepsy, in accordance with the LGS Basis. There isn’t any treatment for the illness.
When Andrea’s companion handed away in 2022, Andrea moved again in along with her dad and mom. From then on her dad and mom have been consistently by her aspect, monitoring her each motion and seizures.
“Imagine the challenge of trying to live independently when you got two parents hovering all of the time,” Greg stated. “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 should be away from Andrea, they’ll ship texts or name her each couple of minutes, ready for a response to show she’s positive. Even serving to Andrea at residence will be difficult. Greg has a number of scoliosis and a spinal wire harm that confines him to an electrical wheelchair. If Cathi is away and Andrea has a seizure in an space his chair can’t attain, he’ll must name for assist.
That’s why an EpiMonitor can present some respiration room for the household, Greg stated. With the units, Greg and Cathi will know the way to assist Andrea when she is having a seizure, with out being in the identical place. They’ll concentrate on doing different actions, whereas Andrea is free to take that stroll, gather their mail, or do no matter she desires by herself.
“I have a feeling in my gut that I will never be able to live on my own,” she stated. “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
Want Guide is a 501(c)(3) nonprofit group operated by The Mercury Information. Since 1983, Want Guide has been producing sequence of tales throughout the vacation season that spotlight the desires of these in want and invite readers to assist fulfill them.
WISH
Donations will assist Silicon Valley Unbiased Dwelling Middle set up an Assistive Know-how Fund that can be used to buy an EpiMonitor for Andrea in addition to related assistive expertise tools for 10 to fifteen households who’ve a member with a major incapacity. Purpose: $15,000
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Donate at wishbook.mercurynews.com/donate or mail on this kind.
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