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Chris and Heather Lea had their first child last August, in New York City, in the midst of a pandemic. Three months later, they learned their baby girl had congenital glaucoma in both eyes.
“We were so scared,” says Chris. “It was a pretty big shock.”
Over the next few months, baby Demi underwent three micro surgeries. It was a stressful time for the young couple, plagued by sleepless nights and difficult days, constantly administering drops and worrying about their only child’s future. Finally, with drains opened in both eyes, Demi stabilized with no signs of vision loss.
“The hardest part was the recovery,” recalls Heather, a physician’s assistant at New York Presbyterian Hospital. “She wasn’t allowed to touch her eyes, and we couldn’t explain that to her.”
Some parents in this distressing situation might have hunkered down and ignored the outside world—not Chris and Heather. As Demi continued to get better, the couple decided they wanted to help other parents of children with glaucoma, and raise money for research and awareness. That’s when they discovered Glaucoma Research Foundation (GRF).
“In my research, I realized congenital glaucoma is not talked about very much,” says Heather. “I work in medicine, but I didn’t know anything about eyes. So I was looking to get more involved in the community. It seemed like GRF was more established than other organizations, and the most reputable.”
Heather and Chris posted Demi’s story on Facebook, mainly to update their friends and family on her progress. At the end of their message, they asked for donations to GRF, hoping to generate a small amount.
“Our initial goal was $500,” says Chris. “The day after our post, we’d raised $2,500, and in the end, we got close to $10,000 — that’s when we realized we could make a real difference.”
“We were surprised by how many people reached out to us with their stories,” adds Heather. “That really helped us feel connected.”
Chris and Heather know they were fortunate that Demi’s disease was diagnosed early, but not all children are so lucky. Childhood glaucoma occurs in 1 out of every 10,000 children in the United States. Primary congenital glaucoma (PCG) accounts for approximately 50% to 70% of all cases of childhood glaucoma.
As they watch Demi grow, Chris and Heather hope she will live a normal life. In the meantime, they plan to keep spreading the word about congenital glaucoma and supporting GRF.
“It was scary in the beginning,” says Heather, “but the more educated we got, the less scary it became. We want parents to be more aware and get their kids tested. GRF is a great place to get educated and connect with other parents.”
Last reviewed on April 09, 2021