Image courtesy of Jax Braggiotti.
When Jax Braggiotti was 11 years old, she woke up one morning to a strange sight: when she looked at her door frame, it seemed as if it was bent inward. She closed her left eye and realized she had a huge grey spot in the middle of her right eye that was blocking her center vision.
A week later, the Long Beach local was warming up for a softball game when she experienced double vision for the first time.
“At that point, my parents got worried and took me to an optometrist,” she said. “He looked in my eyes, quickly sat back and told me he had never seen anything like this before and to get to a retina specialist immediately.”
She would later be diagnosed with Multifocal Choroiditis, a rare disorder characterized by inflammation with swelling of the eyes and multiple lesions in the choroid, a layer of blood vessels and connective tissue between the white of the eye and the retina, according to the National Center for Advancing Translational Sciences (NCATS), a center of the National Institutes of Health (NIH).
At age 14, Braggiotti became legally blind as a result of the condition, which has no known cause and occurs spontaneously, according to NCATS.
“I am missing the center of my vision,” the now 24-year-old explained. “The best way to describe it is to close one eye, hold your fist out about five inches away from your face; that’s what I don’t see. If I look off to the side of whatever I’m trying to see, it helps but still isn’t perfect.”
She has had over 40 different procedures, including hot and cold laser surgeries, steroid injections, steroid implants, surgeries where the surgeon physically removed blood vessels, resulting in numerous scars and holes on both her retinas with little success in restoring her vision.
Braggiotti has adapted to being legally blind enough to function just like anyone else, but says it’s taken a long time just to get to this point. She uses magnification devices to read normal print, has the text on her phone programmed to its largest setting and relies on close family and friends to assist when necessary. Simple tasks like going to school, reading a recipe and walking down the street are much more difficult, she says.
“I can’t see my girlfriend’s face when she is sitting across a table from me, I never know if someone is looking at me and talking to me, which has made for some really awkward moments on my part,” she said. “The one good thing is that it’s made me not care about what people think of me, mostly because I can’t see who is around me. Out of sight out of mind!”
The condition has also prevented her from pursuing a career in the military and law enforcement, and as a legally blind citizen she’s also not allowed to drive. Braggiotti, however, still lives a full and positive life. The young local has three dogs she “absolutely loves” and works with dogs for a living, as well, plays the guitar when she has time, travels whenever she can and enjoys hiking and being outdoors.
Braggiotti attributes much of her ability to living a mostly normal life to her close friends and family. Her twin sister has helped her since her diagnosis and says she probably wouldn’t have graduated high school without her assistance. Her girlfriend has also been a support column for years, never hesitating to “read me a menu at a restaurant or read me a news article,” said Braggiotti. “They are my eyes.”
“Jax does an amazing job of working with her disability,” said Andrea Walker of Bearcoon, a close friend. “For the first month we knew her we didn’t even realize she had one. It’s inspiring to see how positive she stays and I’ve never once heard her complain about what she deals with.”
Now Braggiotti has a chance to improve her sight through an expensive experimental surgery using stem cells. This moment has been a long time coming, considering the past 10 years she has been constantly researching and looking up different clinical trials and available treatments.
“I reached out to countless trials and never got a response,” she said. “I found this one, wrote to them and was finally given the opportunity I’ve always hoped for.”
The experimental surgery would take place on Tuesday, September 13 in south Florida with the Bone Marrow Derived Stem Cell Ophthalmology Treatment Study conducted by Jeffrey Weiss, MD. The surgery is not covered by her insurance, hence the $20,000 cost, not including travel expenses for multiple trips to and from the Sunshine State. So far, Braggiotti has raised $2,575 of her $20,000 goal.
“They will be taking bone marrow from my hip and from there they will be taking stem cells out of it and injecting them into three different places in my eye,” said Braggiotti.
If the surgery is successful, it would improve her vision by 20 to 30 percent and potentially enable her to get a drivers’ license.
“At this point though, any improvement would be amazing,” she said.
Now a variety of Long Beach musicians are banding together this Sunday to throw one heck of a fundraiser to help Braggiotti pay for her surgery, entitled Vision in Sight: A Concert Fundraiser & Party for Jax! The homegrown talents of Bearcoon, dream and surf rock outfit The Amoeba Boys, blues rock group The Cold Shoulders and singer and songwriter Yeggi Kaela Watts will perform at ArTru Group in Lakewood.
Braggiotti also hopes to spread awareness about the rare disorder through the fundraising event.