<div>Hello everyone. My name is Meredith, and I am writing this to share my 18-year-old daughter's story.

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<div>During the fall of 2022, my daughter Casidy was doing amazing! She got her driver’s license, was at the top of her culinary arts program class at her early college high school, and was training for a job as a youth aerial teacher. She got the teaching job in January 2023 and told me several times about how much she loved working with children in a creative environment. I was excited for my child’s future continuing her culinary arts education at Wake Tech Community College and teaching youth aerial at Pura Vida Studio.

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<div>On January 17, 2023, Casidy had her very first Psychogenic Non-Epileptic Seizure (PNES) associated with Functional Neurological Disorder (FND). At the time, I thought it was a panic attack and had never heard of FND or PNES. (If you have not heard of FND, it is a problem with the functioning of the nervous system—the brain’s inability to send and receive signals properly. See <a href="https://www.fndhope.org" target="_blank" rel="noreferrer noopener">www.fndhope.org.</a>)

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<div>Fast forward to today, and my daughter is very ill, unable to feel joy, unable to remember people or things, does not know where she is, cannot walk, and cannot go to the bathroom without help. My 18-year-old child’s days are filled with PNES episodes that last over five and one-half hours and are followed by several hours of recovery time. These episodes happen six out of seven days a week and entail extreme involuntary movement and screaming. Casidy has a nasogastric tube for nighttime feedings because it is impossible for her to consume enough nutrition orally with the PNES episodes, recovery time, and an inability to swallow that follows the episodes.

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<div>Casidy was first diagnosed with anxiety in 2019 around the time of her spinal fusion surgery. Additional diagnoses of depression, Complex Post-Traumatic Stress Disorder (C-PTSD), anorexia, and Functional Neurological Disorder (FND) were made in 2023. Earlier this year (2024), Casidy was also diagnosed with gender dysphoria. She identifies as non-binary and prefers to be called Milo. Since April 2023, she has been hospitalized three times at UNC Chapel Hill, with two of those stays exceeding two months each. Casidy has been in residential treatment and partial hospitalization at the Eating Recovery Center in Denver and in partial hospitalization and intensive outpatient treatment at Veritas (now the Emily Program) in Durham. She’s been through many outpatient providers as well. The siloed nature of mental health treatment has not worked for my child. As of today, we are doing as much as possible with outpatient providers and praying for an opening in a Med/Psych facility with expertise in FND. The type of program Milo (Casidy) needs would blend psychiatry, psychology, neurology, physical therapy, and occupational therapy. I thought Milo (Casidy) would be accepted by Johns Hopkins Pain Management and Function Disorders Program; however, I was told their facility could not accommodate my child’s PNES episodes. We are looking at some other top-rated hospitals in the country and are also interested in the FND program at Re+Active in Los Angeles.

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<div><strong>I am my child’s only financial provider and her primary physical care provider and have continued to work as best I can (nearly full time) through her horrific ordeal.</strong> I spend more than I make on medical bills, medical equipment, professional childcare for two days a week, legal bills, and day-to-day expenses. We recently applied for Social Security Disability Insurance (SSDI), and the application stated the soonest we will hear back is 200 days.

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<div>Following is a list of what this GoFundMe for Milo (Casidy) would support:

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<div>• Lightweight, portable wheelchair (The one given to us by the hospital is difficult to fit through the doorways in our home and is also difficult to transport.)

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<div>• Cubby Bed to be used as a seizure safety enclosure

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<div>• Safety Sleeper for travel to be used as a seizure safety enclosure

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<div>• Medical bills from 2023 - 2024

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<div>• Medical travel to hospitals like Vanderbilt and Brigham and Women’s Hospital, as well as Re+Active in Los Angeles. (Travel across the country would require a medical flight and/or private plane to accommodate the PNES episodes.)

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<div>• Kate Farm Peptide, Shaklee Life Shake, and other high-quality supplements to feed my young adult child’s brain (insurance only covers Ensure, and I am not comfortable with all the ingredients)

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<div>• Home modifications for accessibility

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<div>• Design and construction of an Accessory Dwelling Unit to allow Milo (Casidy) some independence

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<div>• Skilled care for Milo (Casidy) so I can attend work in person at times

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<div>• Legal bills to seek support related to Milo’s (Casidy’s) past trauma experiences

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<div>The year 2024 was supposed to be the year Milo (Casidy) finished high school in person, started college, continued teaching youth aerial yoga classes, and blossomed into their own person. There has been no prom, no graduation event, no graduation trip with family, no celebrations with family and friends, no college applications, no college acceptance, and no work opportunities like other young adults her age. We can handle these losses; however, I cannot comprehend how my child can continue to handle so much mental and physical pain, and this has been going on for nearly two years. We want to get Milo (Casidy) the services she needs to heal and, God willing, enjoy her life once again. Even with all the pain Milo (Casidy) is experiencing, she told me recently that she would like to take some classes to be able to help other people like herself in the future. I believe Milo (Casidy) can do that if she gets the help she needs, and with everything she’s been through, she will be amazing at it!

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Joyce Parzik

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Dan & Nora Smith

Elizabeth Kuhlmann

Pamela Rossow

Elizabeth Anne Edmundson

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Renee Cushmeer

Join Milo's (Casidy's) Path to Recovery

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