Baylee Dillmore - Needs help with medical expenses

I am telling this story for my niece, Baylee Dillmore (age 16) and my sister, Summer Jones-Dillmore. Our goal is to bring awareness to Baylee's rare disease  and help with a lifetime of medical bills my sister will have . Baylee has been diagnosed with Autoimmune Sensory Neuronopathy. This is a very rare disease that came out of no where. In December of 2019 Baylee woke up with her left pinky finger numb. By March of 2020 she could no longer walk without falling and by July 2020 she lost use of her hands. Prior to December of 2019, Baylee was a normal healthy kid playing soccer for 10 years, she also played the violin and cello. Being an honor student, Baylee was aspiring to go to college to become a Bio Chemist and Photographer. This disease has taken all of that away from her. 

Autoimmune Sensory Neuronopathy is a rare subgroup of peripheral nervous system diseases where the individual neurons within the sensory nerves  are damaged. There is no cure for this currently, only treatments with the hope that it slow the progression down. So far, nothing has worked and the disease continues to shut down her nervous system at a rapid rate.

Baylee has undergone several months of IVIG Plasma treatments, Rituxan treatments, steroids and medications. The next step in Balyee's treatment will be a central line inserted while she undergoes Plasmapheresis treatments. My sister even took Baylee to Duke Medical Hospital in North Carolina for a second opinion. Where they solidified her diagnosis. 
They have a great team of Neurologists and Neuromuscular Specialists that is overseeing Baylee's care. And all of this comes at a very heavy cost, even with having good insurance. 

As a family, we hope that this makes it to doctors that are doing research in this area and could maybe help shed some light on Baylee's future and quality of life.
Thank you for taking the time to read Baylee's story and please share it with hopes of finding the right research doctor's!