By Molly Snyder Senior Writer Published Nov 23, 2013 at 5:31 AM

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."

Because of her worsening condition and in order to spend more time with her family, Santiago decided to step back from her professional life in May.

Santiago and her family have always spent a lot of time together, and one of their favorite activities is brewing beer. They have a home "brewery" called NMB, which was named by Santiago’s oldest daughter and stands for Nerds Making Beer. 

"We approach it like a family science project. We talk about the chemical changes every step of the way. The kids really dig it," says Santiago. "We like to give our beers names like Child Labor Lager. Some people think this is all very inappropriate. They’re like, ‘You make beer with your kids? That’s terrible,’ and we say, "Thank you. And yes, our kids make beer. And you are jealous.’"

The Santiago family also has been organic gardening for eight years and now grows 75 percent of the vegetables they eat all year ‘round. They also donate food to pantries and give it away to family and friends.

The urban farm takes up about one-third of their yard and the girls named it "Bumblebee Gardens."

"They will draw bumblebees on a sack filled with our tomatoes before we donate them," says Santiago. "I love that. That’s been an important message to them from us: what do you want to make? What do you want to put out into the world?"

Although Santiago cannot bicycle very often anymore, she and her family used to  have a bicycle "gang" that rode around Bay View – sometimes, much to the thrill of her children, at night.

"It’s difficult for me to ride a bicycle anymore, but once upon a time, the four of us ran the neighborhood by bike," says Santiago. 

Santiago says the love and support of her husband has been so boundless she sometimes feels undeserving and the resilience of her children is inspiring but heartbreaking. 

"They are strong, and I am proud of them," says Santiago. "The best I can do is love them with every ounce of my being. My kids know that they are loved in a way that never ever stops, no matter what happens. This is, by far, the hardest aspect of my condition. Beyond the pain, beyond the body that falters, beyond the unknown, the hardest thing about all of this is not being the mom I wanted to be for my children. I’m working on accepting that."

Santiago has been keeping a personal blog for numerous years and in early 2014, she plans to unleash a new blog focused on other people’s stories as well as an advice column.

"I have no business dishing out advice, none at all. It’s entirely ridiculous. I’m doing it anyway," says Santiago.

Writing is a way for her to channel her thoughts and emotions. And she just really loves to tell stories. Due to her conditions, writing is not always easy, but Santiago continues to do it anyway.

Santiago writes about her medical stuff from a variety of places including anger, sadness and humor. She also writes about her family, including a blog about her 6-year-old daughter’s unhappy reaction to her "little mustache" that was pointed out by another child. 

Santiago took this incident as a teachable moment for her daughter to accept and love her body and decided to let her own facial hair grow naturally to prove her point. 

"So, if you run into me in the coming months and I am rockin’ a wicked peach fuzz, or you happen to notice that my unibrow seems to be creeping into my hairline … give me some props, make sure my kids hear you. Show us some hairy-ass love," she wrote.

The response to the blog post was huge. It blew up on social media and #MustacheLove came to symbolize more than just a hairy upper lip to many people in Twittersphere and beyond.

"For some it was their weight, others, bucked teeth, acne, height, skin color, the list went on and on. Everyone had a ‘mustache.’ Everyone," Santiago says. "‘#MustacheLove’ became more than just a blog post. It was a common thread, a right of passage, the act of breaking free of what is ‘pretty’ or ‘normal’ or ‘handsome’ or ‘good.’ It was acceptance. It was courage. It was reminding each other that we’re all OK, just as we are."

In 2010, with two major surgeries scheduled, Santiago says she needed #MustacheLove more than ever. 

"I needed to ask for help more than I ever had in my life, and had to come to terms with a very different kind of ‘normal.’ I talked a good game, but I was scared, pissed and tired. I was gaining weight, I walked with a cane due to my deteriorating gait, and I looked sickly and sh*tty all the time. As much as I knew how to help my daughter deal with self-image issues, I started feeling uncomfortable in my own skin. And I knew better, right?" she says.

The night before her second surgery, Santiago logged onto Twitter to find that hundreds of avatars had been slightly altered. 

"There, I found the usual faces of my Twitter feed, with one addition. Each one of them was wearing a mustache. A friend had created a Twibbon that overlaid a wicked awesome mustache over all of their beautiful faces. That night, #gosarago was a trending topic in Milwaukee. It was a glorious mustache vigil that I will never forget," she says.

The "mustache vigil" was one of many surges of support that people have extended to Santiago and her family.

"I’ve experienced kindness and support that has humbled me and taught me true gratitude," she says. "I’ve been blessed with friends so dear, that they have cared for my family and me during serious medical treatment. Some have traveled from different countries just to spend time with my family and me. I can’t even articulate the feeling you get from looking around your living room seeing faces that have come from so far away because they love you."

Despite the humor and her often positive attitude, Santiago says she sometimes feels anger or sorry for herself. But not for long.

"I can honestly say that I don’t feel sorry for myself often, but if I told you I never did, I’d be lying.  Mostly though, I’m grateful just to be here. I have a beautiful life. I mean that. I am fortunate in so many ways that I don’t have to focus on the bad," says Santiago.

"This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself."

Molly Snyder started writing and publishing her work at the age 10, when her community newspaper printed her poem, "The Unicorn.” Since then, she's expanded beyond the subject of mythical creatures and written in many different mediums but, nearest and dearest to her heart, thousands of articles for OnMilwaukee.

Molly is a regular contributor to FOX6 News and numerous radio stations as well as the co-host of "Dandelions: A Podcast For Women.” She's received five Milwaukee Press Club Awards, served as the Pfister Narrator and is the Wisconsin State Fair’s Celebrity Cream Puff Eating Champion of 2019.