Local entrepreneur and mom hangs tough despite overwhelming odds
Sara Santiago is a kick-ass Milwaukeean. She has made major contributions to her community as a business owner, mother / wife, gardener, home-brewer and bicycle gang leader. (More on that later.)
She is also an incredible writer and through her blog – as well as her social media accounts – has generously and shamelessly shared often hilarious, sometimes heartbreaking and always raw, honest details of her experience as a professional, parent and person living with incurable illnesses.
Born in Racine, Santiago struggled her entire life with various congenital neurological diseases which produced seizures as well as a host of separate but related illnesses.
"I have a ridiculous number of diagnosed medical conditions. I hit some sort of neurological clusterf*ck jackpot, I guess," says Santiago.
As a child, she says she was often sick and fatigued and she experienced painful migraines. She was active in high school, but started to struggle again in college. On Nov 5, 2002, she got a headache that never went away and by 2009 she says her body was seemingly falling apart and she was in chronic, extreme pain.
Santiago also learned she had epilepsy and underwent two major surgeries on her brain and her spinal cord, but neither of them were successful.
"I just try to roll with it and adjust my lifestyle to accommodate these changes," she says. "Don't get me wrong, I'd choose to be healthy if given the choice, but all of this crap is part of the person I am. Perhaps I wouldn't be the woman I am today had it not been for a host of medical challenges."
Santiago has lived in Bay View since the late '90s with her husband of 14 years, Augie.
"We moved to Bay View from the East Side in 1999 when people still called the Hoan Bridge 'the bridge to nowhere' and KK was mostly boarded up," says Santiago.
The couple has two daughters, ages 10 and 8. They also welcomed a 20-month-old service dog, Cooper, into their home in June to assist Santiago.
Cooper, a purebred yellow lab, was trained by professionals in San Diego to provide seizure response and alert. This means that if Santiago has a seizure, which happens a few times a month, Cooper is able to sense the change in her body chemistry and will "tell her" by scratching her right leg that she needs to sit or lie down.
Cooper then "calls" Santiago's husband on his special service dog phone by stepping on a big yellow button and then lies over Santiago to keep her flat and stabilized.
"Cooper is, quite literally, a lifeline for me," says Santiago.
Cooper is also trained to keep her safe during what's called a "flight seizure" during which Santiago appears to be "normal" and alert but is actually not conscious. Because these states could result in her accidentally doing something dangerous, like walk out into traffic, Cooper is trained to keep her in safe places. In a dire emergency, Cooper will sacrifice his own life for hers.
Cooper is also trained to serve as a mobility dog. Santiago can ask him, or hand signal him, to pick up items, open doors or help her get out of the shower.
Currently, Cooper is in San Diego recovering from a surgery after a benign tumor was found on his foot. The organization that trained Cooper covers all major medical costs for the dog's lifetime and he will, hopefully, return to Milwaukee in two weeks.
Cooper also has a Facebook page and a "mohawk" due to a cowlick on the top of his head. "Cooper is amazing and incredible. He is meant to come back to Milrocky and rock the hawk," Santiago says.
Although Santiago has a very affectionate relationship with Cooper, he is not the same as a pet. Strangers, friends and even her children have to understand this. They cannot play with Cooper whenever they want to, instead, only if Santiago gives him the command that it's OK.
"Cooper blows people away all the time. His best trick is if I tell him to 'watch me' he will not take his eyes off of me. Not for a second. If I jumped in a pool, he would jump in after me," she says.
In 2009, Santiago started Roll Mobile – a mobile development and marketing agency located in the Third Ward – with two friends, Mark Roller and Dan Early.
"Throughout my career, I've been able to hold fast to my three most important business principles: Work hard, tell the truth and don't be a dick," says Santiago. "Well, sometimes I'm a dick, but I work on that daily." Page 1 of 2 (view all on one page)
Molly - thank you so much for sharing this story. Sara - your story touches my heart. Not faced with the challenges your health brings you, I want to reach out and help you in so many ways. I find it hard though to imagine what I could offer you that could even compare to what you have given me by sharing this story. And three cheers for Cooper too!!
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