Living Without LCA: ‘Andddddd we’re off”
“Andddddd we’re off 💓,” Sarah St. Pierre Pettit wrote Saturday afternoon as she, her son, Creed, and her fiancée, Chad, piled into their SUV. They’re headed south for Miami’s Bascom Palmer Eye Institute where doctors await Creed’s arrival for ground-breaking, gene-therapy eye surgery using LUXTURNA™ to correct his LCA RPE65 gene mutation.
LUXTURNA™, developed by Spark Therapeutics, is a revolutionary genetic treatment in which a human-engineered virus containing copies of a normal gene is injected under the retina. Creed’s surgery will be among the first since the Food and Drug Administration in December approved LUXTURNA™, which also is the first-ever genetic treatment in the United States for any inherited disease.
Emotions have been running high for Creed’s mom, Sarah of Mount Dora, Fla., and they kicked into even higher gear Friday. That’s when Sarah’s mom picked up Creed’s dog, Annie, to stay with her while Creed and company readied for Saturday’s five-hour ride to Miami.
She said it “hit hard,” when her mom picked up Annie, described as a pound dog, not a service dog.
“I lost it,” she wrote in an email. “This is it. 9 years of fighting and it’s finally here. So crazy.”
Sarah’s mom, Mary, will leave the pooch with family and friends and meet up with the family in Miami on Tuesday.
Today, Creed is undergoing pre-op tests and could learn when doctors will perform the surgery. The original dates were Wednesday for Creed’s first eye, and a week later, March 28, for his second. Sarah said Creed is sick of waiting, but he is excited for the surgery.
This morning, Creed asked Sarah’s fiancée, Chad, to bring all of Creed’s canes after the second eye surgery so he can throw them in the bay.
Good luck, buddy!!
Read Creed’s story