Searching for Answers, finding Hope

Below is the article and picture included in the Orange County's dinner journal of the Dining in the Dark event that took place in Newport Beach at the Fairmont Hotel.

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.

When the Stevens brought Gavin in for his one-month check-up, the doctor said that sometimes the development of vision is a delayed process, and to just give Gavin another month to respond better.

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 a referral to an eye specialist. To me something was definitely wrong, and I was in tears every day. I had this growing worry, and no one was listening to me."

The Stevens then received a referral to a pediatric ophthalmologist, who determined immediately that something was absolutely not right. Gavin's pupils were responding, but not an the rate they should be, and upon further examination, the ophthalmologist identified atrophied areas on his retinas. The doctor called the situation with Gavin's eyes "dramatic." "I don't know what it is, " he reported, "but the atrophied areas are on the macula which is used for central vision. This is very detrimental to his vision."

We left that appointment in tears with confirmation of everything that was nagging at me for the last three-and-a-half months," says Jennifer. "It obviously wasn't a relief to know that something was definitely wrong with my child, but it was a relief to know that we could start on a new path to figure out was was wrong."

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. She recalls, "That was a defining moment, because we really got the chance to learn what was going on. Dr. Lee characterized Gavin as having a retinal dystrophy, which was possibly Leber's Congenital Amaurosis. But he wanted to perform an ERG [electroretinogram] before confirming the diagnosis of LCA."

Finally in June 2009, when Gavin was eight was eight-months old, an ERG confirmed the LCA diagnosis. "Dr. Lee actually brought out the monitors and cameras and showed us pictures of Gavin's eyes. It was good for us to see what was going on - it helped us connect the dots. It had felt like we were on this emotional roller coaster with no real answers for the first eight months of his life," says Jennifer. "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."

Several months earlier, just after the Stevens took Gavin to the pediatric ophthalmologist, Jennifer started a blog to keep friends and relatives up-to-date on Gavin. She also came across the Foundation and organized a team Gavin's Groupies, for the 2009 Orange County VisionWalk. They raised close to $9,000.

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 the only way to make something positive out of the situation. It really turned into a great outlet for me as a mom. It was a saving grace."

The Stevens also participated in the 2009 San Diego Dining in the Dark, which was another defining moment for them. "The reality of Gavin's situation was still very fresh in our minds, and when the lights went off, I lost it," remembers Jennifer. "But that was ok. I needed to get it out." The family is now organizing their own version of Dining in the Dark, which they call A Night without Light. The idea came to them after having dessert in the dark during Thanksgiving at the home of Jennifer's grandma, Alice. Now they will be hosting Night without Light at grandma Alice's home in April for donors to Gavin's Groupies.

In the meantime, 17-month-old Gavin, also lovingly known as Monkey, is a very happy, talkative boy, and quite the hip music aficionado. He knows several songs word-for-word including: "Say" by John Mayer and "How to Save a Life" by The Fray. "When he hears music, he will just stop whatever he is doing and focus on it," says Jennifer. "I've never seen anything like it in my life. It's soothing to him. Music is definitely going to be a big part of who he is." Gavin also enjoys puzzles and blocks, riding in his wagon, swinging on his swing, and horsing around with his older brother.

It has been a long road for the Stevens throughout their son's young life, but answers and hope have given them comfort and optimism. To learn more about their journey or to become one of Gavin's Groupies, visit www.handsdownmonkey.com