In early August 2025, shortly after their birthday and unfortunately just after their Grandfather's funeral, Zhavia (Kenzi) was admitted to the hospital for what initially was assumed to be a bad reaction to a viral cold because of their familial dysautinomia, also called Riley Day syndrome, with an uncontrollable heart rate, blood pressure, and significant fatigue. They have since been transferred to a different hospital where they are receiving care from their specialty care team. This stay has been longer and more fraught than anyone initially thought -- and thus, so have the expenses.

What was thought to be difficulties overcoming a cold has now developed into difficulties breathing, swallowing, profound proximal muscles fatigue, and has led to a heart rate and blood pressure that is dangerously high and at times dangerously low. This has resulted in the need to be moved up to the Progressive Intensive Care Unit. During this time they have needed specialty vascular access teams come to administer ultrasound IVs frequently, they've had pulmonary and respiration specialists, neurologists, rheumatologists, speech pathologists, cardiologists, X-rays, CT scans, echos, and stress tests. Anything you can think of, they've just about had it.

With all of the testing, the doctors have diagnosed Zhavia with Myasthenia gravis with a current myasthenic crisis. This is when the disease gets so severe that the muscles used to breathe and swallow stop working properly and the body can’t move air in and out. It feels like suffocating while still breathing. This is a medical emergency that often requires ICU care, BiPAP, or even a breathing tube. This makes basic things most people take for granted incredibly difficult. Zhavia has suddenly lost the ability to swallow safely, can start choking on water, and feels a weight on their chest making it hard to breathe. They’re struggling to hold up their arms to feed themselves, and struggling to walk across a room.

Because Riley-Day syndrome (familial dysautonomia) is so rare, doctors know very little about how it interacts with myasthenia gravis. The combination is poorly understood and makes treatment more complicated and dangerous, since both conditions affect the nervous system and breathing in different ways.

Zhavia is a thoughtful, funny, and heartfelt person, a member of the DeafBlind community, and an active and dedicated graduate student. This time last year, they were white-water rafting and rock climbing and traveling the country- truly they are someone with a sense of adventure that pulls you into their center of gravity. A reliable and loyal friend, they are in need of our support more than ever.

Unfortunately, Zhavia's mother has also recently had a stroke and Zhavia had been traveling back and forth from school to try and help take care of her during this time, and as such her mother is not in a position to help support physically or financially. This situation is creating a significant burden on their already overstretched family.

We have created this page so that this community has somewhere to offer support for Zhavia's medical and rehabilitation costs necessary to keep them alive and healthy, and also in school -- and there is quite a lot to cover.

Your support will be put towards paying insurance and co-pays, out of pocket expenses, BiPAP and supplies, durable medical equipment, medication costs, physical therapy, IVIG treatments, hospital bills, specialist doctors, neuromuscular testing, on-going IV care and treatments, frequent lab work, transportation, as well as the unexpected impact this has had on their semester of school which started just last week (August 25th, 2025).

Any donation, no matter how small, will make a huge difference.

Myself and all our families would like to thank you all so much for all of the love and support you send Zhavia. I cannot stress how much I appreciate you standing with us in this time.