sandy reamer is a badass

Some people inspire you by what they accomplish. Others inspire you simply by how they live.  Michigan mom Sandy Reamer has spent more than 21 years as the full-time caretaker for her son, Austin, who lives with Sanfilippo syndrome. Along the way, she's become an advocate, a medical expert by necessity, and a source of encouragement for families walking the same road.

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A lifelong Michigan resident, Sandy Reamer has spent more than two decades caring for her son, Austin, who was diagnosed with Sanfilippo syndrome at age three. Like so many parents, she knew something wasn't right long before doctors had answers. Austin struggled from birth, and after years of appointments, scans, and unanswered questions, her instincts were finally confirmed.

Then the real journey began.

Sandy immediately went to work. She researched every option, traveled to Duke University to explore a cord blood transplant, enrolled Austin in multiple Natural History studies and clinical trials, and made one difficult decision after another with a single goal in mind: giving her son every opportunity possible.

Looking back today, she has no regrets.

"I feel like we tried everything we could."

That's a sentence every rare disease parent hopes they'll be able to say someday. It's not about finding a cure. It's about knowing you left nothing on the table.

One of the biggest lessons Sandy has learned over the years is not to spend too much time worrying about tomorrow.

"I definitely live minute to minute. If I start thinking about the future, it really puts me into a downward spiral."

Instead, she focuses on what she can do today. Sometimes that's researching another therapy. Sometimes it's managing seizures or another sleepless night. And sometimes it's loading Austin into a specialized racing chair and heading out for a run.

If you've seen Sandy's social media, you've probably seen the photos. She regularly pushes Austin through local 5Ks and community races. It's become more than exercise—it's therapy, stress relief, and a way to keep both of them moving forward. Not every run is easy. Laughing about Austin's occasional protests, Sandy simply tells him, "Nope... we've got to train, buddy."

That same philosophy carries into one of her biggest pieces of advice for younger Sanfilippo families: Keep your child moving.  Sandy intentionally delayed using a wheelchair for as long as possible because she believed every step mattered. Walking. Swimming. Horseback riding. Running. Anything that kept Austin active and engaged.

"I really think that's the key... just keep them going."

Of course, life with Sanfilippo hasn't been without moments that, years later, somehow become family legends.

Sandy laughs now as she remembers Austin as "the most aggressive kid ever." He'd steal canes from elderly people, swat unsuspecting strangers, and even terrorize babies. Those moments certainly weren't funny at the time, but like so many families living this life, humor eventually found its way back into the story.

One of the most interesting parts of our conversation came near the end, when Sandy shared the dramatic improvement Austin experienced after being evaluated by an immunologist for recurrent respiratory illnesses. Testing revealed an immune deficiency, and he began receiving monthly IVIG (intravenous immunoglobulin) infusions. According to Sandy, the difference has been remarkable, helping reduce the serious respiratory infections that had previously led to repeated hospitalizations.

Every child is different, and IVIG is not a treatment for Sanfilippo itself. However, families dealing with frequent respiratory infections may wish to discuss an immunology evaluation with their child's medical team.

If you'd like to learn more about IVIG therapy, here's a helpful overview from the U.S. National Library of Medicine: 
https://medlineplus.gov/druginfo/meds/a624082.html

When asked what advice she'd give to a family just beginning this journey, Sandy didn't hesitate.

"Every day is precious. Make every day like it's your last."

Simple words.  Powerful words.  The kind that only come from someone who's lived them. That's why Sandy Reamer is a badass.  Not because she's fearless.  Not because she has all the answers.  But because for more than twenty years she's continued to adapt, to learn, to advocate, and to love Austin with everything she has.
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*Editor's Note* --- This interview was recorded in November 2025.   As our Sanfilippo community continues to learn from one another, we look forward to catching up with Sandy again in the months ahead to hear how Austin is doing and what new insights she has to share with families walking this same journey.

Now let's get to the videos...

QUICK CLIP (1 minute): Sandy talks about how she got into running.

I really think that's the key... Just keep them moving "

​FULL INTERVIEW (19 minutes):

Every day is precious.  Treat each day like it's your last."

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The Reamer family (2024)