My Story

Last summer, on a trip to New York City for my sister's wedding, I developed a serious autoimmune condition that nearly took the use of my legs- only a few months after training for and completing my second marathon. I was hospitalized for a month before returning home to the other side of the country, limited to ambling awkwardly with a cane and unable to work, unsure of what my new normal was going to look like.

On August 21, 2024, my wife, Chantelle, and I hopped on a flight to NYC from our home in Southern California. On the flight over, I began to experience some minor chills but didn't think much of them. Covid had recently made its way through our home a few weeks prior, so Chantelle and I were both feeling confident that our immune systems were in strong shape. After a day or two, the chills hadn't gone away despite the New York summer heat, and it was time for my sister's wedding. I was supposed to give a speech, but I just didn’t feel well enough- like the words weren’t there when I tried to recite them. I got down on myself, thinking I was being dramatic, but I decided to listen to my body and left the reception early.

The newly married couple went on their honeymoon, leaving Chantelle and me behind to watch their home and dogs as planned. As each day passed, I continued getting sicker. I finally agreed at Chantelle's urging to go to urgent care, which sent me to the ER with suspected encephalitis. Despite initially not being taken seriously, a lumbar puncture was attempted but could not be successfully performed. I was sent back to my sister's and told to return to the ER if things got worse, but that it was likely just the flu or some similar viral infection that would pass.

My symptoms persisted for over two weeks: headache, vomiting, loss of appetite, lethargy. Even stepping outside to water plants became too much to handle. My headache worsened, and my neck stiffened significantly. Chantelle caught me losing my balance while walking around the house and noticed that I didn’t sound like myself when talking to her. I developed hiccups that wouldn’t go away for days. My wife picked up the phone to call the ER again, and I couldn’t stay awake long enough to speak to the people on the other line. I was rushed back to the ER.

This is where my memory cuts out for about a week. When I reached the ER, my condition began to rapidly deteriorate. My vitals began dropping and sepsis became a concern, as at the same time I lost control of my bowels and use of my legs. The hospital team narrowed it down to encephalitis, meningitis, or both, and began aggressive treatment. The specific diagnosis didn't come back until I was released from the hospital about a month later: Autoimmune GFAP Astrocytopathy. This rare autoimmune disorder, discovered in 2016, meant that something had triggered my immune system to attack my own brain and spinal cord.

I regained consciousness in the neurology department of the NYU Langone Hospital in Brooklyn. I spent another week in bed getting my strength up and inflammation down, before moving to acute rehab where I spent the next two weeks relearning how to walk. After leaving the hospital and finally returning home, I embarked on another four weeks of intensive, daily neuro-physical therapy with my goal being to run again one day.

It's now been about nine months of constant appointments since graduating physical therapy, including: neurologists, neuro-ophthalmologists, immunologists, IVIG infusions, and full body imaging. Despite my still-ongoing healing process, I am starting to pick up as many work hours as I can again, and I have been training for a half-marathon that I will be completing on August 17th in San Diego alongside my sister, Kristina. If all continues to go to plan, this race will be the first step towards longer races that I will run not only for myself, but as an opportunity to raise funds for others in my position. I'm lucky to be here, and I want to make sure others have the same opportunity to live as I now do.

How you can help: I'm asking for donations to help my wife and me cover costs built up over the past year due to my illness and subsequent inability to work. My wife missed two months of work before we were able to return home from New York and worked part-time the following month to ensure I was stable before returning to full-time. Some of the costs I’m looking for help with include: my original hospital stay, my continued care through the UCSD system, IVIG treatments, rent, and groceries. If I am fortunate enough to exceed my goal, every extra penny will be donated to charities/foundations* that help people in similar situations without support find care. Once I am back on my own feet, my goal is to keep raising money every year for these charities. Even if you cannot donate, sharing my message helps me and others like me more than you know!

Thank you for believing in me and my goal of not only turning the page on my life but potentially helping others in my position find the care they deserve. It is not lost on me that without the support of my family, my outcome very likely wouldn’t have been so positive. Help me get back on my feet so I may fight to help others find their footing as well.

Thank you so much!

Thomas Gustovich

*Local charities I have identified to donate any extra funds raised beyond my proposed goal to. If you’d prefer to donate straight to one of them, here is a good list to choose from:

-Triumph Foundation (triumphfoundation.org)

-Be Perfect Foundation (beperfectfoundation.org)

-Walking With Anthony (walkingwithanthony.org)

-High Fives Foundation (highfivesfoundation.org)

-CA Rehabilitation Foundation - Enabling Independence Program (calrehabfoundation.org)

-Victoria’s Victory Foundation (victoriasvictory.com)

-Bridge to Healing (bridgetohealinginc.com)

-Chive Charities (chivecharities.org)