Helping Tyson With Optic Neuropathy Diagnosis

Tyson Rettie, a ski guide at Great Canadian Heliskiing has recently been diagnosed with a condition caused by a gene mutation which is responsible for 3 different mitochondrial diseases, all of which involve necropsy of the optic nerves. Lebers Hereditary Optic Neuropathy is the name of the version which correspond to the symptoms Tyson is experiencing. There is no known cure. To complicate matters, the drugs that he was taking to try and address the problem initially, has caused degeneration in both his femurs. Tyson is told he will be needing double hip replacement within the next year.

The following is a list of foreseeable upcoming needs:

1. A drug called Idebenone: This is the only treatment available, It costs approximately $250 per month. With this drug there is a possibility of vision improvement. If it works, it will be a long term solution. 

2. Accessibility Tools: One example of this is the JAWS (Job Access With Speech) software. It is the world’s most popular screen reader, developed for computer users whose vision loss prevents them from seeing screen content or navigating with a mouse. It is approximately $900 USD

3. Ability to work, Education and Training: Tyson will be collaborating with the CNIB (Canadian National Institute for the Blind) and other resources to help him start a new career. There is much uncertainty however as to how much funding will be available and how long Tyson will be out of work.

4. Travel: Most of Tyson’s doctors are a 2-3 hour drive away but he will definitely need to travel further in the future to see other specialists.