Nick’s Medical Fundraiser

As you may know, Nick was diagnosed with a rare autoimmune disease called neurosarcoidosis. It has manifested in Nick’s lymph nodes and spinal cord, which is disrupting the signals being sent to his lower extremities and causing severe weakness and numbness in about 70% of his body. There is no known cause, no approved treatments, and no known cures. 

As this is an autoimmune disease, Nick will be unable to work as he is especially vulnerable due to his weak immune system. Additionally, the physical impact to his body will not allow him to continue to be a personal trainer until his symptoms subside.

If you are able, please donate to help pay for Nick’s out of pocket insurance costs, physical therapy, and medications. We understand you may be unable to give during this difficult time we are in, so we would very much appreciate your thoughts and prayers if you are unable to give! 

Additionally, if you’d like to learn more about Nick’s journey so far, keep reading!

Nick woke up on the morning of March 4th feeling excited as it was vault day and he was going to be vaulting with Coach Scott for the first time in about a year.  During warm ups, Nick experienced about 30 minutes of tunnel vision and extreme physical weakness. His symptoms got progressively worse over the next couple of days, and by March 9th, he was unable to walk up the stairs in our home and his knees would buckle with almost every step. At this point, almost all of his stomach, back, and legs were numb. We decided to go to the ER on March 11th and Nick was admitted at St. Joseph’s hospital that night. Over the course of the next few days, various MRIs, CT scans, spinal taps, etc. were taken and we were given several different diagnoses by several doctors: Multiple Sclerosis, Lymphoma, Devics Disease, and Transverse Metlytis. One of the doctors suggested a spinal cord biopsy be taken to eliminate cancer. We decided to get a.... sixth... opinion. Nick was transferred to Barnes Jewish on March 14th. At Barnes, they performed several MRIs and CT scans and performed another spinal tap.

After several anxious days, two emergency doggy surgeries due to a sewing kit (this is a story for another time), and the official diagnosis was Sarcoidosis. Thankfully Dr. Clifford, who is the worlds leading specialist in Sarcoidosis, works at Barnes! Neurosarcoidosis is a manifestation of sarcoidosis in the nervous system.  Sarcoidosis is a chronic inflammatory disorder that is characterized by inflammation and abnormal cell deposits in any part of the nervous system. While it primarily affects the lungs, it can also impact almost every other organ and system in the body.  Neurosarcoidosis is estimated to develop in 5 to 15 percent of those individuals who have sarcoidosis. Of this population, only about 5 percent have spinal cord involvement. 

Nick received his first infliximab treatment on his 9th day of inpatient care, and on the 10th day he was sent home with steroids and other drugs that he will be taking daily. Nick will be receiving infliximab treatments every 4-6 weeks; However, there is no agreed upon standard of treatment for neurosarcoidosis so his second treatment, which scheduled for April 3rd, was denied by insurance. Therefore, our battle with Anthem BCBS begins!

While Nick’s symptoms have not improved, we are remaining optimistic and hope he can get his next treatment soon. However, if insurance does not accept our appeals, we are unsure of what our next steps would be. 

Thank you for your support so far and we will continue to keep you informed!