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New procedure may help give blind Wauwatosa baby a chance to see

A new gene therapy may be the cure
Posted at 9:30 PM, Jan 16, 2018
and last updated 2018-01-17 11:51:14-05

A two-year-old in Wauwatosa might be able to see for the first time, thanks to a new procedure.

McKinley Sovey's eyes would shake even as a newborn, but it wasn't until about six months Parker and Julie Sovey learned she was basically blind.

"All the things that you think about, what kids learn in the first few years of life based on what they see, this piece is totally gone now for her," said Julie Sovey, McKinley's mom.

McKinley can't see, but she isn't completely blind.  She was drawn to our camera lights. 

"I think she can see the contrast.  You can see her put her hand up to the light all the time so she can probably make out there's a shape there," said Parker Sovey, McKinley's dad.

McKinley's eyes would shake even as a newborn, but it wasn't until about six months Parker and Julie Sovey learned she was basically blind.  

Dr. Gabrielle Geddes at Children's Hospital started working with the Wauwatosa family shortly after.

"They had been told a lot of possibilities from things that were lethal to things that were more isolated to the eyes," Geddes said.

Testing showed the two-year-old wasn't going to die from her disease but proved McKinley inherited a retinal disease, something her 4-year-old brother Ryker doesn't have.

"We both are recessive carriers of a very rare gene mutation," Parker said.

The FDA approved the first gene therapy for an inherited disease called Luxturna, giving this family hope.

"It's an injection into her retina that essentially is just going to release a healthy copy of her non-functioning gene," Parker said.

Geddes said McKinley is the perfect age for the surgery. The trials show younger patients saw the best results.

"We would expect, based on the population of Wisconsin, for between one to three people to qualify for this treatment and McKinley is one of them.  She might be the only one in the state," Geddes said.

The gene therapy could be life changing for McKinley and her family.

"The fact that we have the opportunity now to not only improve her vision, but then hopefully for her to sustain that for the rest of her life is just incredible," said Julie Sovey.

The Sovey's said Luxturna has a $850,000 price tag.  They are trying to focus on the fact that sight is priceless for their daughter.  The couple is waiting ot see how much insurance will cover.  

The procedure isn't offered in state so there will be travel costs in addition to the treatment. To learn more and to find out how to help visit the family's GoFundMe page.