The Progress

Lexie Willard-Hill

Lexie Willard-Hill thought this day would never come. But a recent opportunity has brought her the chance of sight.

Lexie was born with a birth defect known as Optic Nerve Hypoplasia (ONH) which is the leading cause of blindness in infants and children.Basically, my optic nerves were underdeveloped, said Hill in an interview with The Progress. I am legally blind in both eyes.

Back in April, she found out from her father-in-law about a new medical treatment study, Stem Cell Ophthalmology Treatment Study II (SCOTS2). This consists of extracting bone marrow from the back of the hip and then injecting collected stem cells directly into the eye area in hopes of regenerating the optic nerves. The study has been ongoing since about 2016.

I applied to be a candidate for the study, had an eye exam done, and heard back really quickly from them last month, said Hill. This is a big opportunity for me.

The treatment facility and research center is located in Coral Springs, Florida near Fort Lauderdale. The study is FDA compliant and conducted under the Institutional Review Board. They have two other locations where they are performing the study including Connecticut and Dhubai, India.

The study is estimated to finish in January 2023. Lexie has been lucky enough to be approved as a candidate for the study and treatment. She will be one of only about 600 patients so far in the study to be treated.

I live a good and happy life, but Ive been given this opportunity, and feel I need to do whatever I can to try, Lexie said.It wasnt until Lexie was 25 that she found out what was wrong with her. Lexies parents, Kevin and Vicki Willard of Logandale, didnt realize anything was wrong with her vision until she was about 3 years old when she was consistently sitting too close to the TV. Eyeglasses were prescribed but they never worked for her.

It wasnt until high school that doctors determined the problem was between the optic nerves and the brain. But Lexie was determined to function like any other kid. She learned to use a magnifying glass to do her homework, reading, and other necessary endeavors. She memorized streets and the local environment layout which helped her in sports of running. Even as a Senior in Moapa Valley High School, she was selected to run part of the relay of the Olympic Torch for the Olympic Games in Salt Lake City, Utah in 2002 through Monument Valley.

Today, Lexie is a personal trainer at the Provo Peaks Ice Arena in Provo, Utah. She also is a single mother of four. She is unable to hold a drivers license, so she must walk everywhere. She has again memorized the map layout of Provo, intersections, streets, buildings, and schools to help her daily endeavor of being a mother and a working citizen.

Having the opportunity to participate in this treatment has been an eye-opening experience for Lexie. Of course, she hopes to be able to see. But she also wants to do it to pave the way for other kids like her in the future.

These kids nowadays wont have to wait until well into their thirties for some kind of solution to come their way, Lexie said. If I can be part of this research and help other people, thats enough for me. Way more than enough.

But it does come with a hefty price. The cost is $25,000 for the surgery and treatment.And there are no guarantees. We dont know how well my body will accept the medical treatment, said Lexie. Some people have to do it more than once.

To help her be able to receive the treatment and be part of the SCOTS2 study, a charitable account has been set up to cover the expenses. So far, Lexie reported that $20,000 of a goal of $25,000 has already been raised. But even if they meet that goal, there will still be additional costs to bear; especially if she needs a second surgery and treatment.

Whatever we raise extra than the goal will be used for covering additional medical costs and another treatment if needed, Lexie said. We will not use any of it for anything but the intended purpose.

Donations may be made in a number of ways. They can be made by Venmo to @Lexies-ONH-Treatment. A GoFundMe page has already been set up at In addition, an account has been set up at America First Credit Union under the name of Lexie Willard Hill Charitable Account #9121179. Finally checks may be written out to Lexie Willard Hill Charitable Account and mailed to PO Box 343, Logandale, Nevada 89021.

I am so thankful to everyone who has supported me in my life and this pursuit, said Lexie. I know this is a chance to hopefully bring more and better opportunities to people for being treated for eye diseases and conditions that cause blindness.

Continue reading here:

A New Opportunity To Receive Sight - mvprogress

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