When Paul was about thirteen, he lost all vision in what had been his "good" eye over the space of just a week or two. Many years later, we discovered that the vision loss was caused by a genetic condition known by Leber's Hereditary Optic Neuropathy. In Leber's, vision loss results from the death of cells in the nerve that relays visual information from the eyes to the brain (the optic nerve.) Shortly after that, the retina in his right eye detached, and has been chronically detached since then, leaving him without even light perception in that eye.
When Paul was in his 20's, he developed glaucoma in his left eye, resulting in gradually losing a great deal of the vision in that eye.
Through all of that, there have been good developments. One was becoming associated with Guide Dogs for the Blind. Paul was matched with his first Guide Dog, Hero, in September 2002. Hero helped Paul to regain the independence that he had gradually given up over the years. Paul is pictured with his second Guide Dog, Avanti. They have been a team for the last four years. Paul feels very fortunate to be associated with Guide Dogs and to have had these two wonderful dogs as part of his life.
Another happy development is the opportunity to take part in a clinical study, Stem Cell Ophtalmology Treatment Study (SCOTS).
The study is registered with the National Institutes Of Health and the National Eye Institute. The study uses stem cells from the patient's own bone marrow. The stem cells are extracted and injected around and into the eye itself. Successful clinical studies of the procedure have already been conducted in Austria and India with patients' vision improving as much as four lines on the eye chart. Paul was referred to the study by his neuro-ophtalmologist. She has two patients who have already participated in the study and have had noticeable improvements in their vision.
The study charges a fee of $19,600 to participate, none of which is covered by insurance. Paul and I are funding the majority of the fee ourselves from our retirement savings. Because the study is being conducted in Fort Lauderdale, we will also be incurring travel and lodging expenses for a week while visiting the clinic. Covering those expenses as well as a portion of the fee is our goal for this fund.
Throughout his life, Paul has said that he hoped he lived long enough for medical science to be able to make a difference in his condition. With this study, we feel that the time is now!