Story Gallery

In 1953, my younger brother and I were diagnosed with retinitis pigmentosa by Philadelphia's internationally-renowned ophthalmologist, Dr. Edmund B. Spaeth. I was three and couldn’t see at night. My central vision was a heartbeat away from legal blindness. Thanks to the Foundation Fighting Blindness, created in 1971 when I graduated from college, our inherited retinal disorder was later diagnosed as Leber congenital amaurosis (LCA).

My parents wanted their kids at home, so we had surgery to fix our “wandering eyes.” I could see enough to read print—up to five letters at once. I was enrolled in Easton, Pennsylvania's public schools before “mainstreaming” was a thing.

As I navigated prejudice, bullying, and zero training in non-visual skills, I became aware of a controversy. My first-grade teacher was wonderful, encouraging me to approach the blackboard even though I couldn’t see it from my desk.

Others believed I should be at Overbrook School for the Blind. Many thought, “If she’s going to be here with our typical children, she can do things the way they do.” That meant no Braille, no white cane, no talking books, no non-visual education. Use your eyes. Don’t feel around with your hands.

In 4th grade, I overheard two teachers say I was faking it. 70 years later, I think I know why. They saw me walk down a dim hallway to the playground without bumping into anything. But in broad daylight, I acted like I couldn’t see. The truth? My eyes never could adjust normally to changes in light.

To say that I had problems with this is a gross understatement. As for real help? Well, not much. As the years rolled on, my vision deteriorated. The bullying increased. I had to make choices about what homework I could complete.

I’ve witnessed decades of legal, technological, and genetic testing advances, along with  improvements in Braille literacy, allowing blind people unprecedented access to one another and to opportunities previously unavailable. Now, we stand on the precipice of returning to those horrible days, and it is breaking my heart.

The U.S. Department of Education has canceled programs vital to the survival of blind and deafblind children. Blindness, especially in childhood, is a low-incidence disability. Future teachers of the visually impaired receive little education about it in standard special education programs. Why the cancelation? Some say it didn't fit in with the current anti Diversity Equity And Inclusion initiative.

It’s high time for a cure for inherited retinal diseases.

From his father, Chase:

Two years ago my wife and I welcomed our baby boy, Ransom, into this world. It was initially scary, my wife had to be rushed back to the OR. When they called me in, their was my beautiful wife and our handsome Ransom. He was not exactly happy about his cold new environment but we were happy to warm him up to it. The doctor came in to do the initial checkup. When she got to his eyes, she took a little longer than we expected. She explained that Ransom's reflection to light was white in both eyes when it should be red. They called in the optometrist who then called in the retina specialist. It was news we never expected to hear. "Your son has bilateral retina detachment." We immediately asked question after question and frantically looked up as much information as we could. Doctorss and nurses and students shuffled in one at a time to see his eyes. At first we thought since his eyes were a rare occasion they wanted to show others who were learning what the difference was. After several rounds of this, we let them know that any unnecessary proding wouldn't be needed. As we left the hospital with Ransom, we loaded ourself with as much information as we could. We found two pediatric retina specialists to contact and knew we had a long journey ahead.

The first few months on FMLA were trying, to say the least. We traveled to Bascom Palmer in Miami and to Tennessee Retina (Dr. Franco Recchia) in Nashville. We learned that children born with retina issues are rare. That meant the field is also rare. Tennessee Retina ended up being our cup of tea. Dr. Recchia was and has been phenomenal...his team, too. He let us know, with great bedside maner, the "matter of factly" facts. Ransom ended up having surgery on his weaker eye to try and remove some of the scar tissue that developed when he was developing. The damage to his eyes from birth left him with only a small reaction to direct bright light. Knowing his vision was stable, and at the moment, there was nothing more on that end to do — we engulfed ourself into all the resources affordable to him. The hospital hadn't really seen a patient like Ransom so they were as helpful as possible with the limited knowledge of resources they knew about.

Ransom's Papa has a friend who knew about Ransom's condition. She has a friend who works for a chapter in the Foundation Fighting Blindness and told us to reach out. So we did. They were great in directing us to the Lighthouse for the Blind and Low Vision in Tampa. He was also afforded services through Florida's early steps program who have been helpful. After some time, patience, and politely pressure due to unforseen circumstances, Ransom finally got a representative from the Lighthouse...Mrs Martha, who is a structured and passionately helpful person to Ransom. As the weeks turned to months and the months turned into years, almost 3 now, we have gone from fear to humble pride. With help, Ransom is all wild boy with a touch of grace. It took him almost a year to sit up likely from not knowing how far, far is and his back was safe. Now, our loveable little turkey is jumping off pool ledges, fearless but caution in his approach. He hones in on his loving big sister's voice and commences to laugh and play and living his best life. He uses his cane to help guide him, but also wants to face what's in front of him strictly with what God provided him. He hits high notes that would put Freddie Mercury in awe and taught himself twinkle twinkle little star on the piano. He loves dancing, singing, and playing with friend. He loves "feeling" things out and life is a puzzle game to him. There is not one once of pity he feels for himself. As Dr Recchia stated "the good news is that he was born like this and will adapt," and adapt he has.

I am proud to have a son who inspires me. My wife, too. She is his biggest ally and greatest nurture. His personality has captivated everyone who encounters him. We love learning about all the gizmos and gadgets they have nowadays for visually impaired people. (The only thing I am not a fan of is Braille printer prices, but there is likely a reason they are expensive.)

We love watching influencers such as Anthony who was highlighted on your page. I hope one day Ransom's journey brings them together. The first video I saw of him was the video of him catching a pass from Gronk...one love! We watched his documentary about his wrestling days. He and others like him who highlight all the possibilities keep hopeful about Ransom's future. T

here are days and times we worry about things Ransom will encounter as he grows...what will we say the first time he comes home crying because a kid at school made fun of him? What are we supposed to teach him on how to remove himself from a dangerous situation? How do we know the difference between being overly cautious and not cautious enough?

I was afforded the opportunity to listen to two brothers speak at my sister's graduation. One had no medical diagnosis and the other had autism. The brother without said when he graduated and then his brother he realized that there wasn't much after high-school for his brother to do. So, he stopped thinking about what can't he do and started thinking about things his brother was good at. They opened a car wash together in Florida.

I hope I always see my son for what he can do rather than what he can't. I hope that parents who are going through similar things with their children know with the right reinforcement, resources, and attitude, it will get better. I look at my son everyday and when I start to get sad knowing he will likely never see all the beautiful things in this world I see, his snotty giggly grin and think "if he can be happy, I can too".

Ransom is my hero and while there are things I may wish for myself, I am so thankful that our baby boy is who he is. He's a rooting, tooting, piano man, bird chirping, yee hawing, water loving, best brother, best son, motivational little two-feet person I've have ever encountered. He has made our journey go from fearful to fearless.

There are a ton of resources affordable to children like Ransom. However, getting the knowledge of those resources into the hands of parents who are just starting their journey is a necessity. We have had help, had to advocate, and have been shown resources we didn't know existed. Every time we learn something whether it comes easy or comes hard, we pass that knowledge on to those who can pass it to those in need. I've always been told you have to give to get. If donating to the Foundation seems like your cup of tea, I would strongly suggest looking into it.

From her mother, Margaret:

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

I wish Serena could see our smiling faces, but at least she can see some lights in the dark. A challenge with blindness is any time there is a loud noise or someone touches her without speaking first, she is startled.

I would be deeply grateful should you consider making a donation to fund pathbreaking research to treat and cure blinding retinal diseases like mine. Please give to Foundation Fighting Blindness to advance this important mission.

In honor of Blindness Awareness Month this October, I wanted to share my story of vision loss. Feel free to share this with others to help raise awareness about blinding retinal diseases.

I have been diagnosed with RP when I was 12 years old. I have ups and downs since. I am getting better accepting help if needed and have adapted with the new and great technology created within the past few years.

From her mother, Jennifer:

October is Blindness Awareness Month. I thought I’d share a little about Amelia’s vision loss, which began when she was about 18 months old.

When Amelia was around 18 months old, we noticed she wasn’t making eye contact as much anymore and she was tilting her head back when looking at things. We thought it was just a silly quirk and laughed about it. But then she began over-reaching for items in front of her. She’d reach for the bowl on her highchair tray and miss. Or she’d sweep her hand across the plate to pick up a piece of food. Initially, we thought she might have a cortical visual impairment. We engaged her with high-contrast books and toys, and made an appointment with the eye doctor to be sure. In the time it took for her appointment with the pediatric ophthalmologist, she began looking at things out of the corners of her eyes and was struggling with fine and gross motor skills as well. The ophthalmologist found that her retinas looked normal, but her optic nerves did not. They were discolored and atrophied. This discovery, along with other symptoms she was experiencing, lead to Amelia needing an MRI. At 24 months old, she was diagnosed with CLN1 Batten disease, a rare, fatal, neurodegenerative disease which takes a child’s vision, speech, cognition, and motor skills. It also causes seizures, dysphagia, and dystonia. She was completely blind by the age of 3.

I can’t even imagine what it’s like for Amelia to be without vision. At this point in her disease, she doesn’t know any different and she doesn’t remember being able to see the world around her. She’s been blind for 5 years now, and is such a brave little girl. We do a lot of exploring in the community, finding accessible parks and trails to enjoy. Our goal is to find ways for Amelia to enjoy and experience the world, even without her vision.

In honor of Blindness Awareness Month this October, I thought I would put my story out there in hopes that someone with a similar condition feels a connection.

My story actually began when I was 6 and I got my first pair of hearing aids. Later on, I eventually lost all my hearing and got cochlear implants in high school. In November 2024, I made an appointment with my strabismus specialist because I felt like it was harder to see distance, and I also mentioned having trouble seeing in the dark and seeing floaters as well as feeling more sensitive to light. My doctor did a few tests, and referred me to a retinal specialist telling me she thought I had retinal dystrophy. Fast forward a few months, in the spring of 2025 I finally got my genetic tests back. I have PHARC Syndrome, which stands for Polyneuropathy, hearing loss, ataxia, retinitis pigmentosa, and cataracts. This is a very rare condition and curiously, very similar to Usher syndrome, which is what they thought I had at one point. Since my diagnosis is still pretty new, my life hasn’t changed much yet. I can still drive under 45 mph, and I use magnifying glasses and increased the font on the computer. At night, my husband takes my arm and guides me. Over the summer, I’ve been going to low vision occupational therapy, physical therapy (to work on balance due to ataxia) all to learn more and improve whatever I could control! My husband and I are slowly trying to add more light and contrast to our home.

My name is Esma, I am 40 years old, originally from Pakistan and now living in the U.S. A few years ago, I was diagnosed with CNGB1-related retinitis pigmentosa, a rare inherited eye condition. At first, it was just trouble seeing at night, but slowly my vision has been narrowing. Now, daily tasks that once felt simple—like reading my children bedtime stories or walking confidently outside—have become real challenges. I lost my driving license.

The emotional side of vision loss has been as hard as the physical. Losing independence is painful, and it has sometimes made me feel isolated and afraid of the future. But my children, my faith, and the hope of ongoing research give me strength to keep going.

I am sharing my story because I want others with vision loss to know they are not alone. And I also want to encourage more awareness and support for research, so that one day families like mine can have hope for treatments and cures. Thank you, Foundation Fighting Blindness, for giving people like me a place to share our voices. Together, we can turn struggle into strength and push forward for a brighter future

In honor of blindness awareness month this October, I have finally decided to share my story with family and friends. Many of you do not know that I live with a retinal disease that has begun to slowly affect my vision.

My vision loss is due to an unidentified gene. Last year I was diagnosed with retinitis pigmentosa, an inherited retinal disease that causes night blindness, loss of peripheral vision, and for many eventually total blindness. Growing up I never had any vision issues and no knowledge of any family member having an inherited retinal disease, so my diagnosis came as quite a shock. In the past year, through many doctors appointments and countless tests, I have learned that I have mild loss of peripheral vision and severe night blindness. Today, however I have realized just how fortunate I am. I don’t speak up about my vision loss because it is currently mild and has not brought on much change to my daily life, but my future is uncertain. I am hopeful its progression will continue to be slow, but I also want to prepare for these changes that are to come. In the meantime, I have chosen to use my disability as an “ability” to advocate for others, bring awareness to fund clinical trials for treatments, and help those who are severely impacted by blindness live their lives to the fullest.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

I would like to share my vision with you because some of you may not realize that I live with a retinal disease that impairs my vision. Since October is Blindness Awareness Month hopefully you will help me spread the word to raise awareness.

My vision loss is due to Stargardt disease, an inherited form of macular degeneration, which causes decreased central vision loss.

When I was first diagnosed with vision loss, I felt hopeless and unsure of what my future would look like. As the years went by, I learned a lot about my visual impairment and learned that I can still do anything I want even if the path to get there is different. My outlook on life changed for the better, and thrives me to push for success. I learned that it is okay to ask for help when needed and to spread awareness about visual impairment.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

I would like to share my vision with you because some of you may not realize that I live with a retinal disease that impairs my vision. Since October is Blindness Awareness Month hopefully you will help me spread the word to raise awareness.

My vision loss is due to retinitis pigmentosa (RP), which causes decreased vision in low light as well as the loss of side vision, also known as tunnel vision.

My greatest challenge with vision loss has been learning how to ask for help and not being able to do everything myself at 57. It's like a whole new learning experience.

Foundation Fighting Blindness is paving the way and on the forefront of finding treatments and cures for inherited retinal disease like mine. With the science outpacing the funds, it is critical that we continue to support the Foundation’s mission to keep pathbreaking research moving forward. Join the cause. Please donate at https://donate.FightingBlindness.org/ShareYourVision.

I feel the importance of sharing my story of vision loss for two reasons. The first is to inspire others with vision loss, and we don't need sight to look forward to accomplishing our visions. Secondly, to remind people that the cause of my vision loss is a deadly disease that still exists and can threaten the loss of sight.

My vision loss is due to Cytomegalovirus (CMV) retinitis acquired by HIV/AIDS.

In 2016, I became legally blind. After living with only one eye for the past 28 years, I lost my battle with CMV retinitis. I am a 65-year-old AIDS survivor. Once I was diagnosed with AIDS (acquired immune deficiency syndrome), CMV retinitis immediately blinded my right. I began my new lease on life by leaving Chicago for warmer weather and made San Diego my home. With the thought of losing so many friends to AIDS and being the only survivor of the group, I knew I had to prove and be grateful. I had just turned 40 and set goals for myself to accomplish by my 50th birthday. My first goal, as a personal achievement, was to return to school and work on my college degree. As a double win, It was a great gift to my parents for their upcoming 50th Wedding anniversary in 3 years' time. My mother's dream has always been for all six children to receive a college degree, but I was the only outcast. I attended classes in the evening as I interned for an attorney during the day. All through this time of interning and going to school, I also faced some medical challenges that I had to fit in with my everyday life. Even though I still had vision in my left eye, I constantly dealt with various eye issues and surgeries with CMV retinitis. I also started developing avascular narcosis in my joints, which caused me to have my first hip replacement. Shuffling school, interning, and medical surgeries and treatments, I started to see the light at the end of the tunnel with school when doctors disclosed an immediate retinal detachment surgery I desperately needed to save my left eye. With only three classes left to graduate, I went under the knife and came out with a successful operation, but I was temporarily blind because of a gas bubble in my left eye needed to heal the retina. Everyone around me felt sorry for me, thinking of me having to put school and interning aside until I could have used my left eye. Well, I refused to stop the filming and found ways to keep the show running. With the help of the ADA compliance office of the school, I was able to receive the assistance I needed to complete my classes and graduate with my class. I graduated in December 2004 and made it to my parent's 50th-anniversary party the following February, Valentine's Day. As for interning, I was assigned an assistant to help me throughout the day. It took about five months for my vision in my left eye to return. Since then, I have moved on from interning to helping my now husband start a Real Estate business. As the medical issues continued throughout the following years, I returned to school to become a Real Estate Broker to work with my husband and enjoy the business and not let medical issues hold me back.

As of today, I have had 12 eye surgeries, four hip replacements, and three shoulder replacements, and I am now legally blind. Nine years ago, I lost the ball with CMV retinitis and the vision in my left eye. Becoming legally blind severed my independence and was the hardest medical challenge I faced. Not having any other choice, my love for living helped me not to surrender my mind to the negativity that others perceived of my blindness. I researched resources available to me and found the San Diego Center for the Blind. There, they taught me to navigate independently around my personal and professional life. I always say to find the good in any bad situation, and that will keep you healthy and focused. The good in my life that help me so much are my husband, family, and friends. Even the kindness of strangers. I couldn't be happier with my life as I am today because I know my love for life is inspiring and motivating. We don't need sight to see the light at the end of the tunnel. We don't need sight to look forward to our visions in life.