High hopes for 4-year-old’s vision after gene therapy

Portland boy among first in Oregon to have new treatment for rare, blindness-causing genetic mutation

By Franny White October 16, 2018 Portland, Oregon

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B-roll footage of surgery for Caspian Soto. Soto is among the first in Oregon to have a new treatment for a rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Zack Soto (left) and his son Caspian Soto, 4, look at the fish in the waiting room of the OHSU Casey Eye Institute, July 25, 2018 in Portland, Oregon. Caspian is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Caspian Soto, 4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation, at an appointment at OHSU Casey Eye Institute, July 25, 2018 in Portland, Oregon. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Dr. Paul Yang takes a look at Caspian Soto, 4, during an exam at the OHSU Casey Eye Institute, July 25, 2018 in Portland, Oregon. Caspian's mother Krista Soto, looks on. Caspian is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Dr. Paul Yang talks with Krista Soto and her husband Zack about their son Caspian's eye condition as Caspian holds a yo-yo close to his face to see it better, during an exam at the OHSU Casey Eye Institute, July 25, 2018 in Portland, Oregon. Caspian,4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Krista Soto and her husband Zack were thrilled when the FDA approved Luxturna, a new treatment for a rare, blindness-causing genetic mutation. Caspian Soto, 4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

One of Caspian's favorite places in his home is this large picture windown. His mother Krista Soto says he spends a lot of time just staring out of it, drawn to the light. Caspian Soto, 4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Caspian Soto, 4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. Because Soto's vision is very dim, he wears a headlamp. "The headlamp gives him a feeling of control," says his mother, Krista Soto, of Portland, Oregon. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Caspian Soto works on a shadow box project with his mother Krista (left) and father Zack Soto at their Portland, Oregon home, September 12, 2018. Caspian Soto, 4, is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

(Left to right) Krista Soto and her son Caspian Soto, 4, talk with Drs. Steven Bailey, Paul Yang and Andreas Lauer before surgery, Sept. 17, 2018 at OHSU Casey Eye Institute in Portland, Oregon. Caspian is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation.(OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Surgeons Andreas Lauer, M.D., (left) and Steven Bailey, M.D., operate on Caspian Soto, 4, among the first patients in Oregon to receive a gene therapy approved for inherited vision loss, September 17, 2018 at OHSU Casey Eye Institute. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Surgeons operate on Caspian Soto, 4, who is among the first in Oregon to have new treatment for rare, blindness-causing genetic mutation, September 17, 2018 at the OHSU Casey Eye Institute. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Two syringes with the gene therapy treatment Luxturna lie on a table in the surgery suite during Caspian Soto's surgery. Soto, 4, is among the first patients in Oregon to receive a gene therapy approved for inherited vision loss, September 17, 2018 at OHSU Casey Eye Institute. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

Surgeons Andreas Lauer, M.D., (left) and Steven Bailey, M.D., (at scope) operate on Caspian Soto, 4, one of the first patients in Oregon to receive a gene therapy approved for inherited vision loss, September 17, 2018 at OHSU Casey Eye Institute. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

The Luxturna treatment is injected into Caspian Soto's eye. Soto is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation, September 17, 2018 at the OHSU Casey Eye Institute in Portland, Oregon. (OHSU/Kristyna Wentz-Graff)

Luxturna gene therapy

(Left to right) Dr. Andreas Lauer gives Krista and Zack Soto an update on Caspian's surgery, September 17, 2018 at the OHSU Casey Eye Institute in Portland, Oregon. Soto is among first in Oregon to have new treatment for rare, blindness-causing genetic mutation. (OHSU/Kristyna Wentz-Graff)