April 12, 2024

Epileptic device is Brady's 'new bling'

“To us, 30 seconds feels like two days.”

Brady Blanco is an 11-year-old boy who lives in Peru with his mom Janell Blanco. He plays, eats and acts like every other 11 year old. The truth is, he’s much different.

In October 2012, Brady was diagnosed with epilepsy.

“It flipped our lives upside down,” said Janell.

After undergoing a number of tests, Janell found out even more bad news; Brady had to deal with more than just epilepsy.

“It started with the epilepsy and grew to many, many more problems,” Janell said.

The tests showed that Brady also has a blood disorder, mega colon, sleep apnea and exhibits signs of obsessive compulsive disorder and attention deficit hyperactivity disorder.

Finding relief: Thanks to the help of the Rockford Epilepsy Foundation and the Danny Did Foundation, Brady was able to get a SmartWatch, which will help in alerting his mom and caregivers when he has a seizure.

“It’s really nice when we get a chance to help a family when it needs it,” said Tom Stanton, executive director for the Danny Did foundation.

It’s a simple, noninvasive watch that others won’t know has superpowers for Brady and his family. It tells the time and date but more than that, it lets his mom know when he has seizure activity.

If Brady can feel a seizure coming on, he can activate a help button that will alert his mom and other caregivers that he may be in need of help.

“It’s my new bling,” Brady said.

The SmartWatch communicates with certain models of smart phones through the SmartWatch app. When seizure activity is detected or when Brady initiates the help button, a text message is sent to his mom.

His GPS location, when seizure activity starts and ends and even audio are available through the information sent via text message.

Alerts come through the watch to Brady when it’s time for him to take his medicine each day. Brady has to take four sets of pills a day. His mom will be able to know if Brady acknowledges taking the medicine on the watch or not.

It’s important that families understand that devices like the SmartWatch aren’t replacing any treatment, Stanton said.

Specifying security: The watch holds up to 10 contacts at a time. His mom can add and remove contacts based on where Brady will be. If he is at a friend's house, Janell can program the mom or dad of his friend so they know when to call for help.

The watch has eased some of the stress off Janell.

“This has allowed a little more freedom,” Janell said.

“The SmartWatch is a really useful device for families to monitor away from home,” said Stanton.

“I feel like it’s great and I can do a lot more,” Brady said.

Janell added that before the watch, she had to constantly keep an eye on him, worrying about when he would have another seizure.

“If we make it through a week without a seizure, we’re doing good,” Janell said. “To him, I don’t know if time stands still. To us, 30 seconds feels like two days.”

Utilizing resources: Janell is using other tools to help raise money to cover medical costs and hopefully to purchase a device called SAMi.

The SAMi monitor would be used to track any nocturnal seizures Brady may have. It is a sleep activity monitor that will sound an alarm if abnormal movements are detected. The monitor is set up to not sound the alarm at motions such as tossing and turning while he sleeps.

The cost of a SAMi kit is $949. With the cost of the monitor and medical bills, and also the monthly subscription costs of the SmartWatch, once the two years of already-paid subscription is over, will add up quickly.

Janell has put on fundraising efforts and has created a fundraiser account on gofundme.com. Gofundme.com allows Janell to reach out to more groups of people, and any funds collected on the website will benefit Brady’s medical needs.

Community support: To help Janell and Brady pay for their medical costs and future use of the SmartWatch and obtaining a SAMi monitor, donations can be made to their account, www.gofundme.com/bradysworld.

Lauren Blough can be reached at (815) 220-6931 or svreporter@newstrib.com. Find her on Twitter @NT_SpringValley.