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Julie Anderson

A Conversation with Traci Wilkerson, Mother of Olivia and Evan

Member profile: The Wilkerson Family

A Pioneering Role as a Clinical Trial Participant TRACI AND GENE Wilkerson would be thrilled to have their kids, five-year-old Olivia and three year-old Evan, participate in a clinical trial for a treatment that might halt or reverse the progressive disease that's stealing their vision.

Traci says they are inspired by the success that Foundation-funded gene therapy clinical trials have had in restoring vision in children and young adults with Leber congenital amaurosis (LCA), the same condition affecting Olivia and Evan. The Wilkersons saw Corey Hass, a nine-year-old recipient of the gene therapy, at a recent conference and were impressed by how well he is doing. "The treatment has been amazing for Corey," says Traci. "He can really get around now."

After receiving the therapy in just one eye, Corey can now ride his bike, play baseball, and even playoutside with his friends when it's dark. The treatment's dramatic effect on Corey's vision has garnered national media attention for him and his parents, and the work of the Foundation. They have been featured on the CBS Morning Show and the CBS Evening News, and covered by other prominent media outlets.

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Olivia recently met Dr. Ed Stone, a Foundation-funded physician and researcher from the University of Iowa, and asked him straight out, 'How are you going to fix my eyes?' Traci says that her daughter has an adventurous spirit and probably wouldn't hesitate to take part in a clinical study. "She is a very open-minded child. She has no fear. I think she would be fascinated with the whole process." Olivia recently met Dr. Ed Stone, a Foundation-funded physician and researcher from the University of Iowa, and asked him straight out, "How are you going to fix my eyes?"

Young Olivia might not quite understand the science just yet, but she can take heart in knowing that Dr. Stone's lab has already gotten a good start on the process by identifying the gene, AIPL1, causing her and her brother's vision loss. Also, Foundation-funded researchers from Harvard are making good progress in developing a gene therapy for people with LCA caused by variations in AIPL1.

While Olivia is more on the precocious side, Traci says that Evan might not be as quick to jump into a clinical trial. "You need to talk him into stuff," she chuckles. "He needs a good push. But he is picking up on what Olivia is doing. She is quick to tell people she is visually impaired and needs help. Evan will just say, 'I can't see real well,' but he's getting braver."

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The Wilkerson Family No one else in Traci's or Gene's families has been affected by a retinal degenerative disease, so they began parenthood with no expectation that their children might have a condition causing severe vision loss. The Wilkersons noticed early on that Olivia wasn't fixing her eyes on them or other objects, but the pediatrician wasn't overly concerned at first.

However, after a few months, the doctor referred Olivia to a pediatric ophthalmologist. She also received an MRI and was examined by a neurologist to ensure that her vision issues weren't caused by another neurological disorder. Eventually, she was referred to Duke, where an electroretinagram, a test that measures retinal activity, led doctors to a diagnosis of LCA.

"I wasn't that upset," Traci recalls. "I looked at it as we could have been dealt a worse hand. I never let it affect me much. I thought, 'This is what we have and we'll keep on moving ahead.' But everybody else, including Gene and the grandparents, was devastated. Everybody has to deal with it in their own way."

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Traci acknowledges that she became more upset when Evan was diagnosed with LCA, because she had hoped that he could be a help to Olivia down the road. "I am still working through that. I know they will have good lives. They'll get married and have jobs. And they'll still have each other."

Olivia already wants to do all the things that teenagers do. She wants to work, she wants to drive. I tell her we have people working on it.The Wilkersons have been strong supporters of the Foundation's VisionWalk program since 2006 and are excited about helping to drive vision-saving research, especially given the recent success in gene therapy clinical trials. "We are happy to be part of the solution," says Traci. "And knowing that someone is researching your child's rare condition and making great progress - that's a huge light at the end of the tunnel."

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