In December, the FDA approved Luxturna, a gene replacement therapy that starts replicating instructions to make the proteins that Creed’s photoreceptors need to function properly. The downside is the cost.
Luxturna costs $425,000 per dose and takes at least two – one for each eye.
Sarah wasted no time in scheduling Creed for the treatment, which he underwent his first dosage earlier this month. Sarah estimates that it will cost them $870,000 total for the Luxturna for Creed, but their insurance will pay for some of it. As far as what’s left to pay, “We’re going to be fine and we’ll recover,” Sarah said. “That’s just what you do for your kids.”
During a one-hour operation at the Bascom Palmer Eye Institute at the University of Miami, Dr. Byron Lam and pediatric retinal surgeon Dr. Audina Berrocal along with a surgical team delivered the gene therapy to Creed’s right eye.
The surgical team removed some of the fluid from inside his eye using a microscopic needle then replaced it with Luxturna.
Soon, Creed will have the same procedure done to his left eye, to optimize his vision and the prognosis is that his vision will vastly improve over the next six months.
“I’m excited for him to have that little bit of normalcy. I just want him to be a nine-year-old who won’t have to worry about chasing the sunlight,” Sarah said. “Creed is dying to see a real rainbow. That’s all he ever talks about, ‘one day I will see a rainbow,.'”
Hopefully, that day comes soon for Creed.
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