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{{Infobox person\|name=Mitchell Herndon\|image=MitchellHerndon.jpg\|alt=Photo of Mitchell Herndon, taken from his X (twitter) account.\|image caption=Photo of Mitchell Herndon, taken from his X (twitter) account.\|birth_date=Unknown\|status=Deceased\|death_date=2nd October, 2019}}
	{{Infobox person
	\| name = Mitchell Herndon
	\| image = MitchellHerndon.jpg
	\| alt = Photo of Mitchell Herndon
	\| birth_date = 2000
	\| death_date = 2 October 2019
	\| nationality = American
	\| known_for = First diagnosed patient associated with Mitchell Syndrome
	}}

'''Mitchell Herndon''' was a courageous teenager who battled a rare and devastating [[Mitchell Syndrome\|neurological disorder]]. Born in Missouri, Mitchell was diagnosed with a [[genetic mutation]] that affected only a few individuals worldwide. Despite the challenges he faced, he made the selfless decision to donate his body to science, hoping to contribute to the advancement of research on neuro-muscular diseases and potentially save lives.
	'''Mitchell Herndon''' was an American teenager from Missouri whose rare neurodegenerative illness later became known as [[Mitchell Syndrome]]. His case helped researchers identify a gain-of-function mutation in the [[ACOX1]] gene and connect it with a pattern of neurological decline affecting movement, sensation, hearing and vision.

== Early Life and Diagnosis ==
At the age of 12, Mitchell, previously a healthy and athletic child, began experiencing difficulties in moving his legs. After a series of medical evaluations, he was diagnosed with a rare mutation of the [[ACOX1]] gene, which had previously been identified in only one other person - a teenage girl in South Korea unable to communicate. Due to the extreme rarity of the condition, it had not yet been named.
	Herndon died in October 2019 at the age of 19. His parents, Michele and Matt Herndon, later helped establish The Mitchell and Friends Foundation to support families affected by Mitchell Syndrome and to raise money for research.

== Progression of the Disease ==
Over the course of seven years, Mitchell's condition gradually worsened, depriving him of his ability to walk, hear, and eventually see. He faced multiple relapses and hospital visits, relying on physical therapy and medications to regain some mobility. However, a relapse in the fall left him confined to a wheelchair.
	== Illness ==
	Herndon was described by Washington University School of Medicine as having been healthy until around the age of 12, when symptoms began to appear. Over time he experienced episodes that affected walking, sensation below the waist, muscle control, hearing and sight.

Despite the immense challenges, Mitchell maintained a positive outlook on life. He used humour to lighten the mood during his hospital stays, cherished time spent with his siblings, and pursued his studies in political science and theology at St. Louis University whenever his health allowed.
	His illness was difficult to diagnose because the condition was extremely rare. Genetic work through the Undiagnosed Diseases Network and Baylor College of Medicine identified a variant in ACOX1. Researchers linked the variant to excess ACOX1 activity and damage to nerve-related cells.

== Contributions to Medical Research ==
In May 2019, Mitchell's story was featured in an NBC News Digital documentary, which shed light on his unique experiences living with a mysterious disease. The documentary garnered widespread attention, reaching millions of viewers worldwide and raising awareness about Mitchell's condition.
	== ACOX1 Research ==
	The ACOX1 gene is involved in peroxisomal metabolism. Mitchell Syndrome is described by the foundation as a gain-of-function ACOX1 disorder, distinct from classic ACOX1 deficiency. The disorder can lead to harmful build-up of hydrogen peroxide in cells, with damage especially affecting Schwann cells and the myelin that supports nerve signalling.

Dr. Hugo Bellen, a researcher specialising in genetics and neurobiology, conducted studies on the mutation affecting Mitchell using fruit flies. His research identified a potential treatment - a powerful antioxidant called NAC-Amide - that showed promise in halting the progression of the disease. However, the medication had not yet received approval from the Food and Drug Administration (FDA) for use in patients.
	Research connected Herndon's case with another patient in South Korea who had a similar mutation and clinical pattern. That work helped define the syndrome and gave clinicians a name for a condition that had previously been almost impossible to explain to families.

Mitchell's neurologist, Dr. Bob Bucelli, collaborated tirelessly with the FDA to establish a protocol for administering the medication safely to Mitchell. Unfortunately, the approval came too late. As Mitchell's condition rapidly deteriorated, the FDA granted permission to try the drug only moments after an MRI revealed the disease had spread to his brain. With irreversible brain damage, it was no longer feasible to administer the medication. Mitchell's family made the difficult decision to remove him from life support, honouring his expressed wishes.
	== Treatment Efforts ==
	Herndon received repeated medical care, physical therapy and other support as symptoms relapsed and partially improved at different points. Researchers explored treatment ideas including antioxidant approaches such as N-acetylcysteine amide, often shortened to NACA.

== Legacy and Future Impact ==
Although Mitchell's journey ended tragically, his contributions to medical research and the understanding of his condition continue to make an impact. Dr. Bucelli identified another patient with a similar mutation in Ohio, and he plans to share the research conducted on Mitchell with the physicians treating that patient. This collaboration offers hope for the next individual affected by this rare genetic disorder.
	Washington University reported that a possible treatment route was being discussed near the end of his life, but his condition had already worsened severely. His case remained important because it gave researchers clinical detail, genetic data and tissue samples for future work.

Dr. Bellen has submitted the first-ever scientific paper on Mitchell's specific mutation for publication. He believes that there may be more patients with the same condition waiting to be discovered. In the paper, he proposes naming the disorder "Mitchell Disease."
	== Donation and Legacy ==
	Herndon wanted his body to support research. Washington University reported that his family fulfilled that wish by donating his body to a neuromuscular disease research programme at the university.

By donating his body to Washington University in St. Louis, Mitchell's selfless act has provided invaluable resources for the research community. His contribution will not only advance knowledge about his own disorder but also potentially benefit individuals with other neurodegenerative conditions, such as amyotrophic lateral sclerosis (ALS), Alzheimer's, and Parkinson's diseases.
	His tissue samples have been used to study Mitchell Syndrome and related neurodegenerative processes. Washington University also reported that Herndon's contribution was important enough for his name to be listed as an author on the first paper describing the disease.

Mitchell's parents take solace in knowing that their son's legacy will extend beyond his lifetime. They believe that his generosity will continue to support medical research and contribute to finding cures for his condition and others like it. Mitchell's memorial service was on October 12, 2019, where his Dad Matt Herndon [https://www.youtube.com/watch?v=yyIfgRczZfY shared a eulogy].
	== Mitchell and Friends Foundation ==
	After Herndon's death, his parents began hearing from other families whose children had been diagnosed with Mitchell Syndrome. The Mitchell and Friends Foundation was formed in 2021 to connect those families, explain the condition and support research into treatments.

	The foundation has supported work at Washington University and Houston Methodist Hospital. Its public materials describe the syndrome, maintain information for families and track research into possible therapies.

	== References ==
	* [https://neurology.wustl.edu/medical-advancement-donor-profile-the-mitchell-and-friends-foundation/ Washington University Neurology: Medical Advancement Donor Profile, The Mitchell and Friends Foundation]
	* [https://www.mitchellandfriends.org/syndrome The Mitchell and Friends Foundation: What is Mitchell Syndrome?]
	* [https://www.mitchellandfriends.org/blog/retrospective-natural-history-study-of-mitchell-syndrome-now-in-process-january-2024-newsletter The Mitchell and Friends Foundation: natural history study update]
	* [https://patientworthy.com/2019/10/23/teenager-killed-disease-rare-name-story-lives/ Patient Worthy: Mitchell Herndon and a rare genetic disease]

	[[Category:Medical]]
	[[Category:People]]