Accentuating the Positive
Life hasn’t been easy for the Day family. First, Doug — just a few months after he married Chris — was diagnosed with multiple sclerosis. For six years, the symptoms were so severe, he sometimes had difficulty feeding himself. But then those symptoms began to subside. So Doug and Chris decided to start a family.
Three failed pregnancies later, Chris gave birth to Derrick, who arrived eight weeks premature. After four weeks in the NICU, he went home, where Chris noticed he wasn’t making eye contact. He was soon diagnosed with Leber congenital amaurosis (LCA), a genetic disease that causes severe vision loss at birth. Two years later, his sister, Meredith, was born, and she, too, was diagnosed with LCA.
Turns out that the chance of Doug and Chris, both carriers of the disease, marrying and having kids was 1 in 1,800. But because they did, each child had a 25 percent chance of getting LCA.
As disheartening as such information may seem, Chris, a vivacious dental hygienist, focuses on the positive. “All the trials we faced before the kids were born made Doug and I more emotionally and financially ready to have two special-needs children,” she says. “Could a 21-year-old handle it? Sure. But maybe I’m better-equipped, at 38, to handle it.”
One way the Days equipped themselves was by joining the Foundation. Over the last three Baltimore VisionWalks, their team, Walking for a Day, has brought in $8,200, and the family is now featured in a promotional video shown during Foundation dinner events. In it, 6-year-old Derrick and 4-year-old Meredith are happy children doing everything from splashing in a kiddie pool to jumping on a trampoline, albeit with sunglasses and, sometimes, waking canes. And they’re almost always singing.
“Oh, yes, music is a big thing in our family,” Chris explains. “Instead of turning on the TV, the kids will sing or play piano. They’re both taking lessons. And I know when they were babies, if they got upset, I’d sing to them. So they may have gotten that from me.”
The kids’ positive attitude also seems inherited. “I think they think the world sees what they see,” Chris says. “Right now, they don’t realize what they are missing out on. But I think that’s coming, as they’re exposed to other kids at school.” In fact, Derrick, a 1st grader, already bowed out of a footrace in gym class, because he was bumping into fellow students.
But Chris and Doug, a real estate settlement officer, are determined to have the kids advocate for themselves. And, through the Foundation, they got involved in Project 3000, a genetic-testing program named for the number of Americans sought to be enrolled in the study, which focuses specifically on LCA. It was inspired by Foundation-funded clinical trials for a gene therapy that have restored vision in both kids and adults whose LCA was caused by a defect in a specific gene. The more researchers know about the causes of LCA, the better they can design treatments.
“I’m not burying my head in the sand to the fact that they are legally blind. We are preparing them to live with visual impairments,” Chris says of Derrick and Meredith. “But I truly believe there will be a cure in their lifetime, or at least a treatment. And the Foundation has been so supportive in providing information and resources. But what I love most about the Foundation is, they are finding the cure.”