We are the Johnston family. Four of us have been diagnosed with Stargardt disease (at very different ages).
Tom: I am the oldest of three children. At age 10, I had the earliest onset of Stargardt disease. My parents worked hard to find me all the resources I would need to not let my vision loss slow me down. At an early age I was always interested in how things worked, taking things apart and putting them back together. It was this interest that lead into one of my hobbies of restoring vehicles, motorcycles and equipment. I enjoy the outdoors; including traveling, camping, hiking, scuba diving and days on the lake. I enjoyed many adventures through the Boy Scouts and achieved the rank of Eagle Scout. I attended the University of Texas at Austin, finishing my degree at University of Texas at Dallas. I have worked in municipal government for the past 31 years and am currently the Director of Administrative Services for the City of Frisco. Our visits with Dr. Stone have been very informative and inspiring. I remember 40+ years ago, sitting in a retina specialist’s office and hearing that “nothing can be done to improve your vision.” Now, with the research being done, there is hope!
David: I also have Stargardt disease. I lost my vision at age thirteen and now I am approaching fifty-one years old. I am an avid scuba diver, skydiver, and outdoor sportsman. I have tried to not let vision loss affect my outlook on life. My three children and I enjoy our adventures together. I currently own and operate a construction company in the Dallas, Texas area. I earned a bachelor’s degree from the University of Texas at Dallas in law/criminal justice. I decided not to go on to law school, and instead pursued my dream of designing and building outdoor living spaces.
I am the second member of our family to be diagnosed with juvenile macular degeneration, later to be recognized as Stargardt. I had guidance and support from my family. Later finding out my younger sister and mother would be affected; we have always had our own family support group to help. Traveling as a family to Iowa for promising news on possible treatments from the Institute for Vision Research at the University of Iowa has given hope to all of us. If just one of us could benefit from treatment, it would mean the world to me. I always look forward to seeing Dr. Stone and his staff during our follow up visits.
Dianne: When I was 15 years old I became the third member of my family to be affected with Stargardt disease. Being the third was not so bad because my brothers paved the way for me in my education. There was already a vision teacher in place who knew my family well. The regular teachers knew that my mom was an advocate for us and our needs. My father pushed for a very strong work ethic. At the time of my diagnosis, I was inspired by art. My art teachers encouraged me to work on larger canvases and to never give up. I received a degree in special education because I knew that was a field in which I could be hired. I have been an art teacher in a private school in South Texas for the last 13 years. I am living my dream of teaching art and helping children to express themselves. I teach drawing, painting and sculpture and I’m not afraid of slime. I work with elementary level students who are very excepting and are unaware of any limitations I might have. My brothers and I have encouraged each other through the years when the world can be cruel and ignorant. My mother developed Stargardt much later in life and became the fourth member of our family to develop this eye disease. She has been able to cope and has received a service dog to help her on this journey. Clutch is an important member of our family. Whenever we have visited Dr. Stone he has provided great hope for us. We appreciate his language especially when he says, ”dot dot dot”. I’m sure this comes from his dictation style of speaking but to us it’s so much more. The dots represent the future of vision and the hope for tomorrow. I try to use the three dots in all my texts to remind me of Dr. Stone and his search for a new vision.
Mary Ann: I’m 72 years old. When my husband Bob and I took our children to Texas Retina Associates, I was told that I also had Stargardt disease. At this time, I was in my thirties, but it hadn’t affected my central vision at this point. I was blessed to have correctable vision until my late fifties. I retired in 2005 after having worked as Circulation Supervisor at our local library. I have always been an avid reader. Today I’m still an avid reader, only now it is with audio books. My children have always been my heroes. They inspire me to find a new way to adapt. In 2012, we visited the University of Iowa Eye Clinic and met Dr. Stone. This mystery we had been trying to understand was explained to us. Thank you Dr. Stone. We now have hope in the future with our kind and compassionate friends at the University of Iowa Eye Clinic! In 2018, I received a guide dog named ‘Clutch’ from the KSDS Assistance Dogs, Inc. in Washington, KS. He is a best friend and a great help when navigating new places