Searching for Answers, Finding Hope

When Jennifer Stevens’ newborn boy Gavin was just a day old and still in the hospital, her intuition was telling her that something wasn’t quite right. Physically, he looked fine. He had all his fingers and toes, he was breathing well, and results from all of his tests were normal. The doctors said that little Gavin was doing very well. But something kept nagging at Jennifer. Her husband, Troy, chocked it up to the medication she was taking for pain.

But after they brought Gavin home, Jennifer’s fears continued to build. “Something just wasn’t right and it seemed to be something with his eyes,” recalls Jennifer, “When my older son, Landon, was born, he just stared at me. He was a very alert baby and looked around a lot. But Gavin wasn’t doing that.”

For the next several weeks, doctors continued to say that Gavin was ok, despite Jennifer’s observations. At the three-month check-up, the Stevens refused to accept that everything was fine with their little boy. Jennifer recalls, “By now, my husband started to pick up on what I was noticing, but the doctor said let’s give it until the fourth month. Well, that didn’t sit well for me. I was a mess. So, I called the doctor back and said I needed the name of an eye specialist.”

The Stevens then received a referral to a pediatric ophthalmologist, who determined immediately that something was absolutely not right. He said that Gavin had very little, if any, vision. Two weeks later, Gavin was examined by Dr. Thomas Lee, a pediatric retina specialist at Children’s Hospital of Los Angeles. Jennifer says that they felt very secure with Dr. Lee, because he sat down and explained everything to them.  Dr. Lee characterized Gavin as having a retinal dystrophy, which was likely Leber congenital amaurosis, an inherited retinal disease that results in severe vision loss at birth.

“To go from not knowing anything to having a little understanding was huge,” says Jennifer. “Before, we didn’t know if Gavin was sick or had a serious neurological disorder.”

Through internet searches, Jennifer came across the Foundation Fighting Blindness, a non-profit organization dedicated to finding preventions, treatments and cures for retinal diseases, and the leading private funder of retinal research. She and her family immediately became involved in the Foundation’s signature fundraising event, VisionWalk, and raised $9,000 for research at the Orange County walk in 2009.

Jennifer says that getting involved with the Foundation was a major turning point for her. “Though it was very emotional for me, I felt that VisionWalk was a way to make something positive out of the situation. It really turned into a great outlet for me as a mom. The Foundation gives me a place to do that.  I am very thankful for the opportunity to be a part of such an inspiring, motivating group of people. ”

The Stevens also participated in the Foundation’s 2010 Orange County Dining in the Dark, a fundraising dinner during which guests eat their meal in complete darkness and experience, if only for a moment, what it is like to live with vision loss.

It has been a long road for the Stevens throughout their son’s young life, but the answers and hope they have found through the Foundation Fighting Blindness have given them comfort and optimism.