“her brain is deteriorating as we speak” - ohio mom shares her daughter's sanfilippo syndrome diagnosis journey

From a terrifying medical crisis at five weeks old to a Sanfilippo Syndrome (aka "childhood Alzheimer's") diagnosis a decade later, Jackie Glichowski fought for answers, trusted her instincts, and refuses to stop fighting to save her daughter's life.

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When Jackie Glichowski first became a mother, she never imagined she’d have to perform CPR on her newborn daughter. But that was just the start. Her daughter Scarlett had barely made it out of infancy alive — rushed to the hospital at five weeks old after a sudden pulmonary hemorrhage, resuscitated in Jackie’s arms, and kept on life support for two weeks. There was no explanation. No clear cause. No answers.  And that was only the beginning.

Scarlett, now 11, would go on to face developmental delays, behavioral outbursts, surgeries, and countless evaluations. But a formal diagnosis wouldn’t come until 2023 — after Jackie, almost by accident, stumbled onto a TikTok of another child with Sanfilippo syndrome. “It was Carrie and Hayden Fowler,” she remembers. “I watched that video, and I just had this awful feeling in my gut. Scarlett reminded me so much of her. It haunted me.”

That gut instinct — plus years of relentless advocacy and deep professional experience in the developmental disability field — is what finally led Jackie back to genetics. And this time, she pushed for a test for MPS III (aka, Sanfilippo Syndrome).  The result was exactly what she feared.

The Diagnosis That Finally Made It All Make Sense

Scarlett has Sanfilippo syndrome, a rare genetic disorder often called “childhood Alzheimer’s.” It causes progressive brain damage, loss of skills, and ultimately early death. Her case is attenuated — a slower-progressing form — but it doesn’t come with a roadmap.  “She could be walking until she’s 30, or lose that ability next year,” Jackie says. “Nobody can tell me what’s coming.”

What they can do, she says, is listen to parents. Especially moms like her, who have lived through the chaos.  “I’ve worked in this field for 20 years. I know how to navigate IEPs. I know what services should look like. And I still had to fight like hell to get Scarlett the support she needed.”

Scarlett only got a 1:1 aide last year — despite years of behavioral meltdowns, academic regression, and failed medications. In one district, she was reduced to attending school just three hours per week. “We’re not dealing with typical behavior,” Jackie explains. “Her brain is literally deteriorating. She’s not choosing this.”

What Schools and Communities Can Do

Jackie is clear: the world doesn’t need to tiptoe around her daughter. But it does need to better understand her. “Scarlett may still be verbal, but what comes out isn’t always what she means. She might say, ‘Shut up, butthole’ as a greeting,” Jackie laughs. “It’s hard to explain that in a grocery line.”
She’s had to comfort confused strangers, defend herself at gas stations, and even try to explain Sanfilippo during a checkout. “I want to make her a vest that says what she has,” she jokes, only half-kidding.

What helps most? Compassion. Patience. A willingness to learn.

“I tell schools: this isn’t autism. It’s not Down syndrome. It’s neurodegeneration. Her brain is misfiring. ABA isn’t going to fix that.”  And for families, Jackie recommends having business cards or handouts to raise awareness — a quick way to explain the unexplainable to the outside world.

One Mother’s Mission

Through it all, Jackie keeps her sense of humor, her strength, and her willingness to share — even when it’s hard..  “I don’t love attention. I didn’t go public with the diagnosis right away. But eventually, I realized sharing helps. It helps other parents. It helps Scarlett.” And it might even save a life.

“If I hadn’t seen that TikTok, I don’t know when we would’ve gotten diagnosed,” she says. “So I tell every parent: trust your gut. You know your child. And if something doesn’t feel right, don’t stop.”

To support Scarlett and learn more about Sanfilippo syndrome, visit Cure Sanfilippo Foundation or Team Sanfilippo. Follow Carrie and Hayden’s story on TikTok. Explore more family stories at The Sanfilippo Project.

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CLIP #1 (8 minutes long) -- Jackie tells the story of her long and arduous journey to get to the root of her daughter's medical condition, which turned out to be Sanfilippo Syndrome

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Clip #2 (1 minute long) -- Jackie explains how Sanfilippo Syndrome is different from other conditions - and why her daughter says "Kick 'em in the cheeseburger" in public at inappropriate times

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Check out the FULL INTERVIEW (26 minutes long) here:

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