Last Friday at Bristow Chick-fil-a, children enjoyed a bouncy castle, met the Blue- Eyed Pirate and jammed to the rhythms spun by DJ Mean Gene. What many of these children did not realize was that their purchases of meals and toys could help to end congenital blindness.
"Did you ever think in your lifetime that there would be a cure for blindness?" asked parent Tabatha Mitchell, pointing to a photo of a boy, who looks about 12- years-old.
The boy, whose name is Corey, is the recipient of a treatment which has cured his congenital blindness, Mitchell explained.
Scientists are now able to cure certain forms of congenital blindness through gene replacement therapy. Doctors have been able to introduce a replacement gene via a virus into the eye, which can cure one type of Leber's Congenital Amaurosis (LCA).
Mitchell is enthusiastic, because it could eventually mean in the near future her daughter Emerie Mitchell-Butler, who has a different form of LCA than Corey, could receive treatment as well.
Researchers now believe that various forms of LCA can be cured. The process would just need to first be approved through clinical trials, and those trials require funding.
This leaves Eme, a rising first grader at Nokesville Elementary School, reading Braille and walking with a cane. Yet anyone who has had a conversation with Eme will testify to her independence and strength of character.
At the event last Friday, Eme did not want to spend too much time answering questions, but was eager to join her friends having fun and being active. She said she is restless sitting in school all day and proudly displays the scrapes on the palms of her hand, as proof of her prowess on the monkey bars.
"Our goal was for her to go to the same school as her brothers and sisters," Mitchell said.
So far, she has been thrilled with the support Eme has received at Nokesville Elementary School, and plans to keep Eme in Prince William Public Schools until she graduates high school.
While Mitchell is very proud that her daughter can navigate her way through school and identify people across a crowded room by only the sounds of their voices, she holds out hope that Eme will soon gain full vision.
Talking not just of herself, but everyone who gets to know Eme, Mitchell said, "They kind of experience that grief, because they realize that whatever little vision she has, she's going to lose."
However, Mitchell and her family are doing more than hoping; they are working to cure blindness.
"Our vision is vision," Mitchell said.
How quickly Eme could regain vision may only be a matter raising the $4 million needed to fund clinical trials. To raise that money, the Mitchell-Butlers have networked with 11 other families whose children are also going blind due to the CRB1 gene. Together they founded The Curing Retinal Blindness Foundation with the goal of funding the research necessary for a cure.
For these families it is a race against time. They know that the sooner they can raise the necessary funds, the sooner their children may regain their vision. But to make this a reality for their children, they have had to reach out to family, friends and community members. Eme's family is no exception.
Mitchell has found that more often than not, they do not need to reach out to others, because others have reached out to them. People who do not even know Eme or her family personally, but have seen her in school, in town or in tee-ball, generally want to help.
"Everybody is inspired," Mitchell said. "Everybody wants to do something."
For this reason Mitchell established "Eme's Army," a group of people who follow Eme's progress. They can keep up with Eme on her website, find out what new advancements have been made towards a cure for congenital blindness and see what fundraising opportunities are coming up in the future.
Mitchell has also created opportunities for people to participate in fun, kid-friendly activities and events, like the party at Bristow Chick-fil-a or Swirlies Ice Cream. For both the children and adults, it does not feel like charity. It feels like fun and community-building activities.
"To think that I helped cure blindness," Mitchell said is an idea that encourages a lot of people.
To her, everyone who volunteers their money or time is a hero for children suffering from congenital blindness. She tells me that they are not just helping to cure blindness, but the innumerable other diseases and conditions that may one day be cured based on these seminal trials.
Now that she knows what is possible, she can not rest.
"It's very exciting to us as parents," Mitchell said.
Readers can follow Eme’s Army on her website. They can find out more about The Curing Retinal Blindness Foundation on their website.
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