Support a Single Mom's Vision Restoration Journey

Hi there,

My name is Kim. I am a native of the Tampa Bay area having grown up in Pinellas Park and moved to Hillsborough for college and then to Pasco county with my kids. I am the mother of 3 wonderful kids--Justin, Kylie, and Ethan. I was a special education teacher for 14 years until I had to retire due to my vision. All my childhood I thought I had a learning disability. My parents were told that I didn't pay attention to the board and that I couldn't read. I got in trouble for talking in class a lot too, but when you can't see anything clearly and no one knows what's wrong they jump to conclusions. At the age of 7 my parents took me to Dr. Bruce Hess (a top pediatric ophthalmologist), who had me undergo a large battery of tests to attempt to come to a diagnosis. I was finally diagnosed with ADOA--autosomal dominant optic atrophy. After that, I was placed in the visual impairment program at school and my grades went through the roof--but I still struggled because it took me twice as long as other kids to read the same amount of text. I eventually attended University of South Florida where I received my bachelor's and master's degrees in special education. The Student Disability Services office helped me a lot during those years through providing copies of class notes and test accommodations. Life after school was no cake walk either and as I get older it only gets more challenging. It may not seem like a big deal but it's very depressing every time I have to wait for medical transportation to take me or pick me up from appointments (especially when they don't show up till hours later and I am stuck). It reminds me that I'm utterly dependent on other people to get me where I need to go. It also strips me of essential privacy as I need help to fill out medical forms at the doctor. Filling out private medical information independently would mean more than anyone with vision could understand. I try to deal with these obstacles with a smile but I now have the possibility of being able to do these things independently and that makes me smile even more.

People all through my life have asked me what I can see or to describe my vision. Since I have never had normal visual acuity, the best I can describe it as is constant blurry vision and so I can't see detail. My current acuity is 20/400 and it is not correctable. Glasses do not help because those correct lenses and mine are fine. I use a jeweler's loupe to read text and my cell phone which results in migraines and eye stress and eye fatigue. For more information on my eye condition, the webpage is just below.

https://rarediseases.info.nih.gov/diseases/11972/autosomal-dominant-optic-atrophy

I became a teacher in 1998 after graduate school and this was a challenge on par with my early years of school. The school system doesn't really accommodate their students with a visual impairment very well and a teacher with a vision problem presents a challenge they don't want to deal with. I wound up having to end my teaching career in 2012 due to the professional challenges of the visual strain of the staggering amount of paperwork involved in being a special education teacher plus the fact that I cannot drive and was always dependent upon friends to get me to school and other professional obligations. Last month, I was looking through the clinical trials website and found the SCOTS-2 study (link below). In this study, they will extract my own bone marrow and then inject it into the areas of the eye that are damaged. I contacted Dr. Levy and researched some of the success stories and then submitted my eye report. I was approved last week.

https://clinicaltrials.gov/study/NCT03011541

While I am very excited to be able to participate in this study, it does come with a heavy price tag. It is patient funded and the surgery itself is $22,700. I will also need to stay nearby in a hotel for the week for recuperation and immediate post operative appointments. I am asking for help with the surgery and the hotel.

I am a single mom of 3 and this life changing surgery is far out of my financial means to obtain without your help. If this is as successful as it promises to be, this gives me hope for my 2 sons, ages 24 and 14, who have the same visual impairment. I can't wait to see my kids' faces clearly.

Please share this with friends and those who you think would be willing to help me. This is the dream of a lifetime and something I never thought I'd live to see.