Help Austin with medical expenses - Visual Snow

As many of you might have previously heard, our son, Austin Reed, age 24, has had numerous medical issues in the last 10 months, and the out of pocket medical expenses are adding up quickly, especially with his therapy for a rare condition called Visual Snow Syndrome.

To catch everyone up to date, as Austin was finishing up his Master's degree in Public Service Administration from the Bush School of Government  (College Station Texas A & M) in the spring of 2020, we all know COVID hit the world.  Although he earned his degree, he was not able to walk in any graduation ceremonies. What should have been the beginning of an exciting time in his life, soon turned in the opposite direction.  COVID even prevented him from actively pursuing an ideal career.

July 31st, Austin became sick and was taken to the ER with what turned out to be a kidney stone.  By early November, he would have a total of 3 ER visits and 2 CT scans for a second kidney stone. If you have never experienced a kidney stone, consider yourself blessed ! They are horrible ! But we were soon relieved to be over that ailment. 
However, in mid to late November, Austin began to experience some unrelated symptoms.  He complained of more frequent and severe headaches, lasting for days, and had nerve pains off and on in his extremities. After a doctor visit and lab work, they determined he was extremely low on Vitamin D, which was treatable.  A few weeks later, he then began to notice a change in his vision in his left eye, which seemed to be getting worse by the day. Paired with the headaches and ringing in the ears, we became very concerned and made another trip to the ER a few days before Christmas. After a referral to an opthamologist, he was diagnosed with retinopathy and then referred to a retina specialist, who stated it should go away on its own in a couple of months. The temporary partial vision loss, along with the unexplained pains and on-going headaches began to throw up a red flag for some sort of neurological issue- fibromyalgia, MS, lupus, etc. 

We were finally referred to a neurologist in January 2021 and had a head MRI on Jan 14th, along with prescription medications to help with the neuropathy and headaches. The retinopathy finally cleared up in February, and the MRI turned out normal, but Austin was still having most of the same symptoms, and with no definitive answers as to why, his stress and anxiety level increased. He also began to experience more visual problems that were different from the retinopathy- image burning, light sensitivity, and "a thousand little bugs or dots racing across his visual field". Even when he closes his eyes, it doesn't go away. 

Fast forward to April 1st- the retinopathy returned, he still has the other major visual disturbances, headaches, aches and pains and ringing in the ears, and the neurologist has ordered a lumbar puncture to rule out MS, Lupus, Sjogrens syndrome, and any other auto immune disorders.  Now all of our stress levels went through the roof.  After doing some personal research, we also scheduled an appointment with a neuro opthamologist in Plano for a very rare condition called Visual Snow Syndrome. 
Praise the Lord the lumbar puncture results came back negative for MS and the others, but it was just tagged as nonspecific inflammation of the central nervous system- still no specific answers but at least we know what it is NOT. 

April 27th, Austin and Kevin headed to Plano to see Dr. Shidlofsky. After 2 days of testing and evaluations, he is definitely diagnosed with Visual Snow Syndrome.  Please read the attached article to learn more about VSS or google Visual Snow Syndrome or The Visual Snow Initiative.   https://rarediseases.org/rare-diseases/visual-snow-syndrome With VSS, there is nothing anatomically wrong with the eyes, and all testing and MRI results usually come back normal. It is very rare and there is no cure.  And they are not even sure what causes it.
But Austin is part of a private study that Dr. S and his staff/visual therapists are conducting, and it includes participants from all over the world and is very promising. 

As part of the study, Austin and Kevin  have to travel to Plano once a week for 14 weeks. He participates in visual therapy sessions/exercises that hopefully will retrain the brain to process the visual information differently to lessen the "snow" effect, and he even has daily homework therapy sessions to do at home between visits. Since this is so new, and considered a private study, no part of it is covered by insurance, and it is a costly treatment.  But we, and the doctor and therapist are very optimistic that this will help Austin be able to function normally again soon. 

Due to all the health and vision issues, Austin has not been able to drive or work or bring in an income since graduation, and is currently living back at home. Our health insurance coverage for him has a very high deductible which was met in the fall, but it started over once again in January and the out of pocket medical expenses are adding up with all of the extensive testing and treatments and medications. 
We are hoping to raise enough funds through this campaign to lessen the financial burden, and lessen the stress on Austin as we seek answers and help. 

All donated funds will be used to help offset the weekly expenses of Austin and Kevin traveling to Plano for 14 weeks, and to cover the cost of the private study/therapy sessions for his VSS and possible future retinopathy treatment. 

We thank you and appreciate any support you can give, whether it be through donations, no matter how big or small, by sharing this Go Fund Me link, for prayers for complete healing and safe travels, or just sharing the information of this rare neurological condition with someone you know. 

Thank you and God bless !