JACKSONVILLE, Fla. – A local family is pleading for the community’s help after their toddler was diagnosed with a rare form of eye cancer, the same disease that her mother suffered as a child.
In August, Aria Lee Bohannon, 1, was diagnosed with retinoblastoma, a cancer of the nerves in the eye, which mainly affects children and is very rare.
The family was alerted when the child’s maternal grandmother, who was babysitting at the time, noticed a white reflection in Aria’s pupil, a symptom known as Leukocoria.
“We get a call from my mom and she says, ‘You kind of need to come home. It’s important,’” Aria’s mother, Heavenlee Van Buren said. “She took a picture of [Aria] and she sent me that picture and as soon as I saw that picture, I knew. I knew what it was.”
It was the same, white speck as Heavenlee’s mother found decades earlier in her own daughter’s eye, which, further testing confirmed, was caused by retinoblastoma.
“She had a large tumor in her left eye and several small ones in her right forming and she actually still currently has the large one in her left but the right ones are slowly shrinking due to the chemotherapy that she’s going through and laser treatments,” Van Buren said. “It’s freaky to know that my daughter is about to go through the same thing that I went through as a baby.”
This disease is extremely rare, representing only about 2% of childhood cancers, and only about a third of diagnosed patients have the disease that affects both eyes, according to the National Institutes of Health.
Because the disease is so rare, available treatments are difficult to find. It’s why the family has been forced to drive back and forth between Jacksonville and Miami for the specific, targeted chemotherapy that Aria needs.
The diagnosis, as well as high inflation, has forced the family to shoulder an especially heavy financial burden. Before a donation from a family member, Aria’s parents said they nearly had their apartment’s utilities shut off due to a lack of payment to JEA.
Still, both parents said their first and only priority is their daughter’s health and that forgoing her treatments is not an option.
“I think my biggest fear with all this though, is her having to go through all the treatments and still having to lose her eye,” Aria’s father, Michael Bohannon said. “If it has to happen, it has to happen, but we’re going to do all the treatments even if that’s still going to happen.”
The family has been posting to a Facebook page where followers can see updates on Aria lee’s medical fight. They’ve also set up a GoFundMe campaign to help offset the costs of getting their little one this treatment.