Walt Silva’s Recovery from Medical Emergency

Hi everyone,

We are the Silva family (Walt-Father, Donna-Mother, Samantha-daughter, and Justen-son) from Williamsburg, Virginia and are humbly asking for your help with a life-threatening neurological condition (autoimmune cerebritis/encephalitis) that suddenly afflicted our father/husband about nine months ago. Walt, a dedicated aeronautical engineer at NASA and an adjunct professor at William and Mary, was previously in excellent health. His symptoms began in December 2022 with dizziness and then escalated to involuntary movements, vocal tics, tremors, mood swings, and significant weight loss. Despite extensive medical testing, no conclusive diagnosis was reached until recently, when specialized testing discovered markers associated with Bickerstaff brainstem encephalitis, possibly linked to a prior COVID infection Walt had contracted back in late 2022. The recommended treatment for this condition involves expensive intravenous immunoglobulin (IVIG) infusions estimated at $6000 a month. We are seeking financial assistance to help cover these high costs. Please help us to get our father/husband back to full health and his normal self. We greatly appreciate any funding you can offer. Every bit helps us as we continue to fight this battle. If you’d like to read the full version of our story, scroll down below. We’ve also provided a link to one of Walt’s interviews from early 2022 before this all happened below to give you a small picture of who he is.

https://youtu.be/iFSMYpibUnA?si=qSXvccoEdG9TSSW0

Sincerely,

The Silva Family

Full Story:

Our father/husband Walt is a 37-year aeronautical engineer at NASA and adjunct Professor at The College of William and Mary with a PhD in Applied Math. Up until recently, he has maintained an entirely clean bill of health, with regular annual check-ups that always came back normal, and zero history of any physiological or mental health issues. For 62 years, Walt has maintained a healthy lifestyle and is incredibly high-functioning, most recently working on the design of a supersonic commercial airplane (X-59) that will change the way humans conduct commercial flights. He is known among his family, friends, and colleagues as a motivated, positive, composed, kind, and inspirational individual with a wonderful sense of humor (the kind that will make your stomach hurt from laughing so much). In many ways, Walt is the American dream, having been born and raised as a child in Colombia before immigrating to the United States, learning English as a second language, and then navigating his way through engineering school and eventually into NASA (all on his own without any financial assistance ir career guidance whatsoever). Despite losing his own father at age 12 and undergoing some related, traumatic experiences throughout childhood, he managed to become an absolute super dad and husband, providing love, support, and guidance that many people could only wish for.

Starting in December 2022/January 2023, Walt began experiencing a range of neurological symptoms that have gradually worsened over time. It started with sporadic episodes of dizziness/lightheadedness when engaged in activity (e.g. walking, riding his bike), and then progressed to highly disruptive involuntary motor movements and vocal ticks, and intermittent hand/arm tremors, all of which were accompanied by bouts of severe anxiety and mood swings/behavior changes (uncharacteristic of what our father/husband has ever experienced or exhibited). In addition, despite maintaining a healthy appetite, Walt consistently lost weight, and as a result, is currently about 30 lbs. under his normal weight.

Since these symptoms developed sequentially over time (vice appearing all at the same time), initial medical care involved a series of primary care visits. Standard blood tests were conducted, but did not reveal any significant abnormalities aside from severe vitamin b12 and ferritin deficiencies. However, even after supplementing and correcting Walt’s b12 and ferritin levels, the neurological symptoms persisted and worsened, with continued weight loss and the intensification of the involuntary motor movements/vocal ticks. This began to interfere with our husband/father’s sleep, which only made matters worse.

After being rejected for admission by two separate hospitals in Williamsburg, VA (with one stating that our husband/father’s condition did not warrant admission or even an examination by the on-call neurologist), we took Walt to VCU medical center in Richmond, VA, which admitted him for what turned into a 10-day hospital admission. During this time, the neurology team there conducted a wide range of testing to include an EEG and MRI and CT scans of the brain, full blood work-ups that checked for paraneoplastic conditions, generalized inflammation, heavy metals/toxins, parasites, and possible underlying malignancies. They also conducted a CT scan of the abdomen/pelvis and a spinal tap. To our and the neurology team’s dismay, ALL of these tests returned normal results, which left all of us dumbfounded given the continued presence of the neurological symptoms. The neurology team confidently stated that all serious neuro degenerative diseases had been ruled out due to the lack of abnormal test results combined with the fact that Walt showed no blatant signs of cognitive decline.

Due to an inability to identify a tangible cause for my father’s symptoms at the time, VCU hospital released him after 10 days with some prescription medications ordered with the aim of alleviating his symptoms. We tried to fight for further medical investigation, but were told that he did not meet the requirements for admission anymore. We left the hospital without any diagnosis at all, and as expected, the medicines given to us did not help with our husband’s/father’s condition, and in fact, he has continued to worsen with each passing day. The motor movements/vocal ticks have become so disruptive that he has struggled at times to carry out daily activities, and he continues to have hand/arm tremors. He remains at a very low body weight for his norm and can no longer sleep without medication. This has also drastically impacted his ability to focus, leading him to have to forego teaching at William and Mary this semester as well as take quite a bit of time off from his work at NASA.

As this continued on for months, we pestered VCU neurology to continue its medical investigation. After repeated battles, our own research, and persistent requests, we were able to get them to conduct some additional, specialized testing looking for indications of rarer autoimmune and neurological conditions that can sometimes be missed through standard testing. This led to us finally receiving some answers approximately two weeks ago. One of the panels conducted showed that Walt had elevated levels of a specific antibody associated with autoimmune encephalitis (and guillan-barre syndrome), leading VCU neurology to now assess that our dad/husband developed a form of autoimmune encephalitis known as Bickerstaff brainstem encephalitis following having COVID in late fall of last year. They have apparently been seeing increasing instances of neurological after-effects (to include the development of guillian barre syndrome and other diseases) post-COVID.

Now that we finally have a diagnosis, we plan to move forward with treatment immediately, which involves intravenous immunoglobulin (IVIG) infusions. IVIG are pooled antibodies (provided by various donors via blood donations) used to treat a range of conditions, such as autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to replace the patient’s existing, malfunctioning antibodies with healthy ones pooled from various donors, which helps to stop the patient’s immune system from mistakenly attacking the patient’s own body/mind. This treatment is relatively benign but very effective with a good chance of full recover within 6 months. Unfortunately, this treatment is incredibly expensive, reaching ~$40,000 a month without insurance and still $6000 a month with insurance coverage. Therefore, we could use all of the help we can get.

In addition, while we are confident this treatment will work, if it does not for some reason, we will have to pursue other avenues (Johns Hopkins or other specialized medical centers such as Mayo Clinic) that will conduct deeper investigative work but will of course come with additional costs.

Thank you for any support you can provide in helping us get our father back to good health.