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Family stories

What this actually looks like from inside a family

Statistics make the case. Stories make it real. These are the trajectories we exist to change — and the ones we hope to be able to rewrite for the families who come to us.

About these stories. The first two stories below are real family stories, shared with the families' permission. The three that follow are composite illustrations — profiles assembled from patterns documented in the published clinical literature and in advocacy reports. They are not real individual patients, and identifying details are fictional. As families we serve choose to share their own experiences with us, their stories will appear here in their own words, with their written permission. We will always label which is which.

In their own words

We share real stories to raise awareness of PANDAS and PANS around the world, and to help families who are still searching feel less alone.

Real family story  ·  Part 1  ·  Age 16

A daughter's sudden illness, and a family's search for answers

She was a Civil Air Patrol Airman of the Year and a runner who did a 180-mile challenge for a friend. Then, in a single week, she stopped walking.

Before

Before she became sick, our 16-year-old daughter was vibrant, compassionate, organized, and determined. She served in Civil Air Patrol and earned Airman of the Year within six months. She trained in search and rescue, helped with recruitment, pursued leadership, and helped her team win at the state and regional levels. She also volunteered with children with special needs, swam and ran regularly, and completed a 180-mile running challenge to support a family friend.

When everything changed

In June 2025, severe tics and anxiety appeared suddenly, followed by mood changes and a dramatic decline. She developed POTS symptoms and stopped walking within a week. She also had non-epileptic seizures, including one that required emergency care. After a serious strep infection, she struggled to eat and experienced hallucinations, rage, and harm OCD. Her family searched for answers, but conflicting explanations and calls for psychiatric evaluation left important connections unclear.

The caregiver's side

Her mother became her full-time caregiver. She was supporting a child who could no longer walk, was having seizures, and was facing major mental-health challenges.

“This is the beginning of our story. Next, we'll share what helped.”

If this sounds like your family, you're not alone. Our weekly HELP Circle is a place for caregivers to talk with families who understand.

Share your story, and help others feel heard.Tell us your story

Real family story  ·  Asher

Asher's fight, and his spark returning

Two years ago, PANDAS took away Asher's speech and his ability to walk, and led to a four-month hospital stay. Today he's home, and with treatment his family is starting to see him come back.

What happened

Two years ago, Asher became seriously ill with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), an immune-related illness that dramatically changed his life.

It began with tics, anxiety and OCD. Then it progressed to loss of speech, inability to walk, severe food restrictions, and a four-month hospitalization.

Where he is today

Asher is home. He still relies on IV nutrition through a central line, but with treatment, his family is finally beginning to see his health improve and his spark return.

Rallying around Asher

Our first community event, The Power to H.E.L.P. Blood Drive, is being held in Asher's honor. It's a way to support him, raise awareness of PANS/PANDAS, and bring the community together behind his family.

Tuesday, November 17, 10 am – 3 pm
Oak Park Community Center, Buena Vista Room

Give bloodSupport Asher's GoFundMe

Composite illustrations

These are profiles built from patterns in the published research. Each one shows the path through today's system next to the path we're building.

Composite illustration · Age 6

“Ella” — the overnight change

A thriving kindergartner. Then a strep infection, and within two weeks a different child.

What happened

She began washing her hands until they bled, refused foods that "felt wrong," and had violent hour-long rage episodes unlike anything her parents had seen. Her handwriting deteriorated. She stopped sleeping alone.

The path through today's system

Her pediatrician referred her to a child psychologist for "sudden-onset OCD." Six months and four providers later — including an ER visit during a rage episode — a parent's own online research led them to request a strep titer. No local clinic offered a coordinated evaluation.

The path we are building

A single intake triggers a same-week multidisciplinary evaluation: infectious workup and exam, immunology review, and a psychiatric and behavioral baseline.

Ella starts an antibiotic and anti-inflammatory protocol within days. ERP therapy begins in parallel. A care coordinator secures insurance authorization under AB 2105.

Elapsed time from onset to treatment: under three weeks instead of six-plus months.

Composite illustration · Age 10

“Marcus” — the severe, treatment-resistant case

Repeated infections, then severe OCD, motor tics, and suicidal statements. He could not attend school and required constant supervision.

What happened

By the time his family found a physician who recognized the pattern, they had spent over $40,000 out of pocket on evaluations and a first IVIG course that a prior insurer denied as "experimental."

Why this case is the hard one

Children like Marcus need immunomodulatory therapy delivered in a monitored setting, coordinated with psychiatric medication and intensive behavioral therapy — and someone willing to fight a denial through appeal. Almost nowhere offers all four.

The path we are building

Our licensed infusion suite delivers a monitored IVIG course in a calm, sensory-aware setting, coordinated with psychiatry and intensive ERP.

The advocacy team files the prior authorization and, when it is initially denied, wins on appeal citing AB 2105.

Over nine months Marcus returns to part-time school with a 504 plan our school liaison helped design — and the family's out-of-pocket cost drops dramatically, because the care is billed to insurance.

Composite illustration · A family of four

The whole-family toll

Two years into their daughter's illness, the parents were near financial collapse. One had left a job to provide care. Their younger son had begun showing anxiety from the chronic household stress.

What the medical chart misses

Nothing in the daughter's file records that her brother stopped inviting friends over, that her mother hasn't slept through a night in a year, or that the family's retirement account is gone. And yet those are the things that determine whether a family can keep going long enough for treatment to work.

The path we are building

Beyond the daughter's medical care, the family enters the wellbeing program: parent-training groups, a sibling support track for their son, a financial and insurance navigation plan, and a peer-mentor family who has already been through it.

The outcome families in this position report most often is not a lab value. It's a sentence: "we are a family again."

What these stories have in common

Every service in these accounts already exists somewhere in the healthcare system. What does not exist in Southern California is one place that compresses diagnosis, delivers infusion therapy, wraps the family in support, and fights the insurance battle on the family's behalf.

That integration is the whole product. It is also the difference between a six-month odyssey and a three-week one — and in these conditions, that difference is often the difference in outcome.

See how the model works

Share your story

If your family has lived this, your story can shorten someone else's search. Parents who read a story that sounds like their own child often bring the right question to their pediatrician weeks or months sooner.

Sharing is entirely your choice, and you control how much appears. We will never publish your name, your child's name, a photograph, or any medical detail without your explicit written permission — and you can withdraw that permission at any time, for any reason, and we'll take the story down.

Tell us your story

Ways families share

  • Written story — in your own words, any length
  • Anonymous or first-name-only — many families choose this
  • Video or audio — for families who'd rather talk than write
  • Peer mentorship — talk directly with a family just starting out
  • Advocacy — testify, speak at events, meet legislators

A note on privacy. Your child's medical information belongs to your family. Please don't send detailed medical records through a web form — we'll set up a secure channel if your story moves forward.

More family stories

Coming soon, including what helped.

As more families choose to share their experiences, their stories will appear here in their own words and with their written permission.

Share yours