Back to Reality

We came home from the Florida Keys rested, dejected. I had been in a  fog since May 24 - will I ever forget that day? Not likely.

After the Dr. Sedwick debacle, we searched for another pediatric neuro-ophth while awaiting the results from the genetic testing lab. I was apparently doing things wrong; the way to get an appointment with a specialist is to get the OK from insurance and then make the appointment.

When we finally saw Dr. Auerbach in mid-July, Tanner was now legally blind. I was hoping that he would have an answer other than Leber's Hereditary Optic Neuropathy, although all the literature I had read up until then was pointing in that direction. Dr. Auerbach wasn't convinced that it was LHON, and wanted to run some blood tests. Finally! A physician who was doing something tangible.

It wasn't all good news, however. I asked Dr. Auerbach if he could release Tanner for sports, which is all he really cared about. "Are you kidding? He would get his ass kicked!"  I replied, "Then let him! This is all he wants to do, and he needs a release from a physician."

I did not win. Tanner did not get the release. In the middle of all of this, however, I contacted a very caring person involved with our insurance company. I explained to her that I was not satisfied with the doctors here, and I wanted to take Tanner to Bascom Palmer Eye Institute, affiliated with the University of Miami. She expedited the paperwork, and we took Tanner to Bascom Palmer in August.

Bascom Palmer is amazing. It really makes you realize what a podunk you live in when you go somewhere like that. Everyone from registration to the technicians were great. And right away, Tanner received a conclusive diagnosis of LHON.  We met Dr. John Guy, a crazy smart doc who is working under a $6 million grant from NIH on a specific mutation of LHON. He pulled out his Iphone and showed us images of the optic nerves of the lab animals that he has been testing. Super geek, but I was awed. I have been in the presence of many intelligent people in my life, but this man is Nobel Prize-worthy smart.

I cried when I finally got a diagnosis for my son. There is no cure or treatment for the disease, but it is also not life-threatening. But how his life had changed in two short months. Tanner took it all in stride, and was happy that Dr. Guy wrote him a release: "Cleared for all physical activity, except motor-vehicle driving."   He's funny, that Dr. Guy.