Post-Surgery: Beginning to See the Light
This is the fourth in a series following the progress of Creed Pettit, a 9-year-old Florida third-grader, who completed treatment in March with the breakthrough gene-therapy drug called LUXTURNA™, approved as the first gene therapy for RPE65 genetic mutations and as the first-ever genetic therapy in the United States for an inherited disease.
A rainbow drawn over Creed Pettit’s left eye on Wednesday, March 28, marked the correct eye to receive surgery, but even more so, the arc symbolizes what the third-grader from Mount Dora, Fla., hopes to see after his recovery.
Creed’s mom, Sarah St. Pierre Pettit, said in a Tuesday email that her son’s right eye shows distinct improvement since surgery last Wednesday, March 21.
“The doctor already saw new growth in the photoreceptor yesterday (Monday, March 26),” Sarah said about improvements already showing in the right eye. “She was so excited.”
Six days after the first surgery, the boy’s mom wrote, “Creed’s spirits are so high.”
“He keeps saying ‘I did it without light,’ when he reads or eats or draws. It’s so cool,” Sarah said. “I am loving every moment but must admit I’m completely exhausted.”
She said that he is asking so many questions about what things are. “It’s wild.”
In 2011, doctors diagnosed Creed at almost 3 years old with LCA. He later received a confirmed genetic
diagnosis of LCA-RPE65. Sarah tried to get him into clinical trials for LUXTURNA™ when he was 3 and 4, but her little boy could not perform tasks required by the study, such as trying to navigate a maze.
Preparation for Creed’s treatment came shortly after LUXTURNA™, developed by Spark Therapeutics, received Food and Drug Administration approval in December and around the time of Creed’s 9th birthday in January.
He had told his mom that after surgery, he couldn’t wait to see a real rainbow and he couldn’t wait to throw his canes in the lake.
Since Creed’s first surgery, Sarah has taken photographs of him pointing to her without any lights on and smiling at the camera after being able to see it.
Before the first surgery there had been a few delays, so to help pass the time, Creed and his mom sang “I’ll be there for you,” the theme song from the television show “Friends.”
Sarah said she cried a lot.
Before today’s surgery, Sarah wrote: “The experience was mind-blowing. Our LUXTURNA™ arrived and
we waited for it to be mixed. It felt like an eternity waiting. Mom (Sarah’s mother), Chad (Sarah’s fiancée) and I fasted with Creed.
“The team was amazing. They were so good with Creed and I, explaining everything and allowing me to hold him as we went back and (allowing us to) stand next to him as he went to sleep. It was so hard to leave. Yet I felt this sense of comfort knowing they truly had a love for Creed.”