Imagine living your entire life with perfect vision, seeing every sunset, every green and brown leaf in the fall and the faces of all your loved ones. Now imagine waking up one morning to complete darkness.
This is the fate of the one in approximately 50,000 individuals living with Choroideremia (CHM) and the fate of Theta Chi member Will Looney’s younger brother, Sam, unless a cure is found.
This year, Theta Chi decided to take a personal approach with its philanthropy by raising money for the Choroideremia Research Foundation, an organization that aims to find a cure for Choroideremia.
CHM is an inherited retinal disorder that causes progressive vision loss, eventually leading to complete blindness.
It is most common in men because it is passed through a genetic defect of the X-chromosome.
Danny Nocharli, junior in civil engineering and the head of philanthropy for Theta Chi, said the idea for this year’s philanthropy came to him this past summer.
“I got to spend a lot of time with the Looney family this summer and hang out with Sam,” Nocharli said. “This is such a horrible disease, so I brought it up to the president and vice president (Will) and they thought it was a good idea. Will is one of my best friends, so this means a lot to me.”
Will, senior in chemical engineering, said he still remembers the day his brother was diagnosed.
“Sam (15) was diagnosed when he was four years old,” Will said. “I didn’t really have the full understanding then, but I remember my mom was really upset.”
Will said his brother has not yet lost his eyesight, but he has already begun to experience “night-blindness,” what is commonly considered the first symptom of CHM.
“He can’t see anything at night, and it will only get worse over the next 10 years,” Will said. “We are hoping that by the time he loses his eyesight (approximately age 35) there will be a cure.”
Nocharli said the philanthropy events Theta Chi has hosted to raise money for the Choroideremia Research Foundation have gone extremely well, so well that the group had to raise its goal.
“We started out with a goal in mind of $5,000,” Nocharli said. “Then we raised it to $7,500 and then $10,000 and now $13,000.”
Joseph McCormick, freshman in finance and a pledge at Theta Chi, said watching everyone participate in philanthropy this year has inspired him.
“This is my first philanthropy, so I didn’t really know what to expect,” McCormick said. “But it’s been great to see this kind of support and teamwork.”
Nocharli said this has been the biggest philanthropy Theta Chi has done in the past 10 years.
“No one expected to get this far, but we keep pushing through,” Nocharli said. “We have now raised a little over $10,000 dollars.”
Theta Chi is busy preparing for its final event on Nov. 3 — a three-course meal that guests will eat blindfolded so they can experience what it’s like to live the life of someone with Choroideremia.
“I just can’t imagine going from being able to see all of God’s creations to then one day not being able to see at all,” Nocharli said.
For more information or to donate to Theta Chi’s philanthropy, go to www.gofundme.com/savingoursight.
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