An Amazing Year

 In Blog

This is the seventh 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.

MOUNT DORA, Fla. – Third grade tends to be one of those childhood times we remember with fondness. For Creed Pettit, his third year in elementary school marked the amazing and life-changing experience of dramatically improved vision through a breakthrough genetic therapy.

Creed underwent surgery in March for a mutation in his RPE65 gene that caused a rare inherited retinal disease (IRD) called Leber congenital amaurosis (LCA).

Returning to school, the 9-year-old, from the Orlando suburb of Mount Dora, for the first time could see the words written on his classroom white board. Before surgery, he received most of his information up close from a computer monitor on a desk shared with his teacher.

Creed no longer needs special bright light bulbs to see. He navigates around Mount Dora Christian Academy more easily, although he still has help from his buddy, Michael, who’s been a human guiding light at school since they became friends in first grade.

Even more so, Creed is coming into his own, socializing more with classmates and feeling more confident about his classwork.

He is now joyfully celebrating his first summer with much better vision, or as he says, his first summer without LCA.

The young boy is one of the first patients to receive LUXTURNA™, a ground-breaking treatment developed by Spark Therapeutics. The surgery entailed injecting into his retinas a genetically engineered virus containing copies of a normal gene that pumps out a version of an enzyme needed for healthy vision. Dr. Audina Berrocal performed the surgery at Bascom Palmer Eye Institute in Miami.

Creed’s vision before surgery measured 20/200 in his right eye and 20/600 in the left. Now it is 20/40 and 20/100. A person with 20/600 vision sees something 20 feet away that a person with 20/20 vision would see 600 feet away.

Before the school year ended in June, Creed received his first-ever pair of prescription eyeglasses. As a toddler, he wore non-prescription glasses that looked like goggles to help with what doctors incorrectly diagnosed as a lack of depth perception.

His teal-framed glasses mark another milestone in his elementary school years at school, where teachers and staff showed understanding, patience and compassion with their new charge.

“What we did was give him a chance to be normal,” Principal Lori Hadley said. “He’s been a special and unexpected blessing, for sure.”

His first-grade teacher, Marissa Rapp, said Creed becoming part of her class presented a new experience for everyone. She put his desk next to a floor plug, so he could have his light ready to charge and made sure he had extra light in class. She avoided moving furniture, but when she did she would walk with Creed around the classroom to familiarize him with a new setup.

Mrs. Rapp characterized Creed as remarkable. She wasn’t sure whether he would enjoy one of the first events at school – the annual grandparents’ day program – because of the extra noise and more people.

“So, we tried to talk it up and make him excited about it. He had music all week, so he could learn the songs the kids had been working on. Once he got on stage and the music started, he sang and was so excited. He loved it. It was a very special moment to watch him and his grandmother in the front row.”

Back in first grade, Creed didn’t go on the annual field trip to Disney’s Animal Kingdom because it would have been difficult for him to see the animals.

This year, he told Mrs. Rapp all about the animals he saw at the Disney theme park.

“It is amazing to see all the things that he now gets to experience. I am blessed to have been a part of Creed’s journey and am excited to continue to watch him grow.”

In second grade, teacher Denita Snider accommodated Creed’s needs with bright lights, an extra storage bin for easy access to his supplies, larger fonts, special wide-lined paper and extra help. She realized Creed was an auditory learner and gave him explicit oral instruction and directions and checked for understanding.

She made sure Creed walked in the front of the line and he often held her hand as the hallways were dark and difficult to navigate.

Mrs. Snider also had Michael Hamburg in her class. Michael is a classmate with a big heart who took it upon himself in first grade to help Creed.

She said Michael is Creed’s buddy when they walked in line, sat at lunch, sat in chapel and went to the restroom.

“He helped Creed pack his backpack, find supplies he couldn’t see, you name it. Michael was always there to help. In fact, Michael was just awarded “Disney’s Dreamer and Doer” award at our awards day ceremony for all he has done for Creed in the last three years.”

Mrs. Snider tutored Creed this past school year, and since surgery he’s gradually learning he can do more things, such as see inside his desk, find stuff in his backpack, see the chair legs and go around them and see faces around him.

“He has been so used to not being able to see the little things we take for granted that he is now learning to really look at all the amazing things around him that he couldn’t see before. A whole new world has opened up for Creed.”

When third-grade teacher Faye Shyers learned Creed was going to be in her class, she accommodated him with brighter lights, a computer monitor and working closely with him.

“I wanted to make him as independent as he could be,” Mrs. Shyers said.

Before surgery, she said, Creed would stay at his desk and read during breaks in class.

“Since the surgery, he is actually getting up and being one of the guys.”

Mrs. Shyers, knowing one of Creed’s wishes after surgery was to see a rainbow, began a project in which each of his 15 classmates created an image of a rainbow, put the pictures together into a book called “Somewhere Over the Rainbow,” and presented it to Creed when he first came back to school.

“He looked at each and every one and made a comment about every one. “‘Oh wow, they put a lot of time into this,’” she recalled Creed saying.

Before the end of the school year, though, Creed’s wish came true. He reveled in seeing two rainbows so far, the latest with his mom and her fiancé from their front yard.

“Wow, that’s pretty,” he told his mom as he pointed to the spectrum in the sky.

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