Maddie Aumann: From an FND Diagnosis to Maddie’s Law
FND Nope
Moderator
I first became aware of Maddie Aumann's story and the proposed Maddie's Law in early January 2026. I understood the broad outline of the case and knew that concerns surrounding FND, misdiagnosis and diagnostic bias were central to the legislation. But I did not fully understand the chronology of what had happened to Maddie, or just how disturbing some of the details surrounding her care were.
Then I recently watched an interview with Maddie's mother, Christine Aumann, and I was shocked. I have spent a considerable amount of time reading and writing about FND, misdiagnosis and diagnostic overshadowing. I have encountered stories of patients being dismissed, symptoms being attributed to FND and subsequent diseases being discovered. But one part of this interview shocked me more than anything else.
During the discussion of the final week of Maddie's life, while she was in intensive care and experiencing extreme pain, the woman accompanying Christine in the interview holds up a drawing that she says was made for Maddie by an ICU nurse. The drawing depicts a person standing on a stage and includes the words:
“And the Oscar goes to Maddie.”
That was the part that shocked me most. This was not an anonymous internet comment or some insensitive remark made years earlier. According to the account given during the interview, this was something drawn for a seriously ill 17-year-old girl by a nurse caring for her in intensive care during the final week of her life. The cruelty of that is difficult for me to comprehend.
And there is an even more disturbing context to those words. The woman accompanying Christine says that Maddie had told her personally the previous summer:
“She was going to have to die to be believed.”
Her family eventually removed Maddie from the Missouri hospital and took her to another hospital in Illinois. According to the account given during the interview, clinicians there determined that Maddie was in full organ failure. Maddie died on 7 October 2025, aged 17.
Hearing this made me go back and look much more carefully at Maddie's story and at the legislation that now bears her name. Her story also resonated with me because aspects of what Christine describes are uncomfortably similar to experiences we have had ourselves with FND and the way the diagnosis can influence subsequent medical care. The history leading to that ICU admission matters.
The FND Diagnosis
According to Maddie's mother, Christine Aumann, Maddie began experiencing significant pain at around eight years old. She was seen at a local children's hospital by a pain team, given medication and referred to psychology. Christine says the pain was subsequently treated as a behavioural health issue, with anxiety considered to be worsening Maddie's symptoms.
Several years later, when Maddie was approximately 12 years old, she experienced a seizure severe enough for her family to call emergency services. Christine describes what happened when Maddie arrived at hospital:
“Almost immediately with very little testing, they determined it was a psychosomatic disorder called functional neurologic disorder or psychogenic non-epileptic seizures.”
According to Christine, that diagnosis changed the course of Maddie's medical care. She says:
“Once that label got put on her chart, no one could see past it.”
Maddie's subsequent symptoms were repeatedly interpreted through the FND diagnosis. When Maddie lost weight, Christine says it was interpreted as Maddie choosing not to eat. When she experienced pain, clinicians treated it as pain being amplified by her mind. The family were told that they were reinforcing Maddie's symptoms and making her condition worse. Christine says they were instructed to ignore Maddie's seizures and walk away. As Maddie's condition deteriorated, the FND explanation remained.
“Just a Very Severe Case of FND”
Maddie's mother describes her daughter's condition becoming progressively more serious. Her leg eventually turned completely purple, she lost feeling and function, and she became unable to walk. Christine also describes profound cognitive decline. Yet according to her mother:
“They kept telling us this is just a very severe case of FND.”
The family tried to obtain another medical opinion, but Christine says this became extremely difficult because Maddie's electronic medical record followed her between healthcare providers. She says:
“As soon as they would see that she had that label they didn't want to deal with her or us and we couldn't get a second opinion.”
Eventually the family found a way around that system.
A Second Opinion
Maddie was eventually evaluated by a neurologist in Washington, DC, outside the electronic medical system that had followed her previous care. Christine describes the neurologist's reaction:
“Their neurologist was absolutely horrified.”
The neurologist arranged for Maddie to be admitted for further investigation. Christine says this included:
“Testing that should have been done two years prior.”
Specialists began considering explanations very different from FND, including a genetic disorder and autoimmune encephalitis. Maddie returned home while genetic testing was pending. Approximately two months later, according to Christine, the genetic results came back.
A Genetic Diagnosis
The genetic testing identified paroxysmal extreme pain disorder, associated with an SCN9A channelopathy. Maddie's obituary would later describe her illness as a rare SCN9A channelopathy. Christine says:
“That explained her pain and it also explained her seizures and her autonomic disorder.”
The chronology described by Maddie's mother is important. The FND diagnosis came first. The genetic diagnosis came later. But the discovery of the genetic disorder did not erase the FND diagnosis from Maddie's medical history. According to Christine, that continued to matter.
The FND Label Remained
Christine recalls thinking:
“Okay, great. We have answers here.”
But she says not every healthcare provider accepted the new diagnosis. Some clinicians treated Maddie according to the treatment plan provided by her physician, while others continued returning to behavioural or functional explanations. Christine describes occasions when Maddie presented to an emergency department and treatment was withheld while clinicians waited for the episode to resolve.
During one such episode, she says Maddie's heart rate reached 288 beats per minute and Maddie stopped breathing. Only then, Christine says, did the response change:
“They would panic and be like, ‘Oh, this isn't behavioral.’”
The woman accompanying Christine in the interview also describes Maddie having a seizure lasting approximately 90 minutes during which intervention was stopped because clinicians believed Maddie's brain needed to stop “behaving that way.” According to Maddie's mother, the genetic diagnosis improved Maddie's care with some clinicians, but the previous FND label continued influencing how other clinicians interpreted her symptoms.
The Final Week
During the final week of Maddie's life, she was in intensive care and in extreme pain. Christine says:
“They went back to the FND.”
She says Maddie's stronger pain medication was withdrawn and she was instead given Tylenol. The events described from that final week are particularly difficult to reconcile with the fact that Maddie had already received a genetic diagnosis explaining significant aspects of her illness.
Her family ultimately removed Maddie from the Missouri hospital and took her to a hospital in Illinois. According to the account given during the interview, clinicians there discovered that Maddie was in full organ failure. Maddie died on 7 October 2025. She was 17 years old.
Hear Christine Aumann's Account
The short video clip below contains the section of the interview that prompted me to look much more closely at Maddie's story. I have included it because Christine Aumann is Maddie's mother, and I think her account should be heard directly rather than only through my summary of what she describes.
The clip above is an edited extract from a longer interview.
Full Facebook interview (around 1:35):
https://www.facebook.com/RealTalk933fm/videos/1095299976492411/
Christine Aumann on Facebook:
https://www.facebook.com/christine.smithaumann/
Christine's account provides important context for understanding not only what Maddie and her family experienced, but why they became involved in trying to change the system.
From Maddie Aumann to Maddie's Law
Maddie's experience did not remain simply a private dispute between a family and the healthcare system. Missouri Representative Tricia Byrnes became involved with Maddie and her family and began working with Maddie on proposed reforms aimed at protecting medically complex children and addressing concerns around premature diagnosis. Byrnes would later describe what happened to Maddie as “diagnosis bias.”
Maddie herself became involved in the effort to change the system while she was still alive. After her death, that effort continued in her name. It eventually became Maddie's Law.
The legislative effort also included proposals aimed specifically at preventing premature FND diagnoses, including greater attention to differential diagnosis, appropriate investigation, physical examination and documentation of the reasoning used when diagnoses such as FND are made. Seen in the context of Christine's account, it is not difficult to understand why.
Why This Matters
Maddie's story touches directly on a concern I have repeatedly raised about FND. The problem is not simply that medicine sometimes gets things wrong. Medicine operates under uncertainty. Diagnoses are revised. New evidence appears. Better tests become available. Clinicians sometimes reach conclusions that later turn out to be incomplete or incorrect. The deeper problem is what happens when a diagnosis made under uncertainty is subsequently treated with a degree of certainty that the evidence never justified.
FND can become particularly consequential in this respect because it does more than give symptoms a name. It can provide an explanatory framework for almost everything that follows. Pain can become amplification. Seizures can become functional events. Difficulty eating can become behaviour. Further deterioration can become evidence of increasingly severe FND rather than evidence that the original explanation should be reconsidered. And once that explanatory framework enters the medical record, every clinician who encounters the patient afterward may inherit it.
Maddie's story demonstrates the potential consequences of that process with unusual clarity. According to her mother, Maddie's worsening condition did not initially cause clinicians to abandon the FND explanation. Instead:
“They kept telling us this is just a very severe case of FND.”
Then something far more significant happened. A genetic disorder was identified. One might expect that to have forced a fundamental reassessment of everything that had come before. Yet according to Maddie's mother, even that did not completely dislodge FND from her daughter's medical care.
That is an epistemic problem. A medical diagnosis has to remain open to revision when the evidence changes. If deterioration can be explained by the diagnosis, failure to improve can be explained by the diagnosis, new symptoms can be explained by the diagnosis, and even the discovery of another disease does not meaningfully weaken its influence, then we have to ask a very basic question:
What evidence would have been sufficient to make clinicians reconsider it?
The argument does not need to be that every person diagnosed with FND has an undiscovered disease. It does not even require arguing that functional symptoms cannot exist. It is much simpler than that. The epistemic bar for making and maintaining a diagnosis should be proportionate to the consequences of being wrong.
When a diagnosis can influence whether future symptoms are investigated, whether acute events are treated, whether patients are believed and whether subsequent clinicians approach the patient with an open differential, the consequences of getting it wrong can extend far beyond the original consultation.
Maddie's story is an extreme example, but the underlying question is not extreme at all.
When the evidence changes, can the diagnosis change with it?
For Maddie Aumann, according to her mother's account, even the discovery of a rare genetic disorder was not enough to completely escape the influence of the FND diagnosis that had come before it. That should concern anyone interested in getting diagnosis right, regardless of where they stand on FND.
