By Andrew Martins
JACKSON – Two teenagers who are living with a rare hereditary disorder are expected to benefit from fundraising efforts that will help their family purchase high-tech assistance.
Clayton Engle, 15, and his sister, Rachel Engle, 13, are gradually losing their vision because they have a genetic form of juvenile macular degeneration known as Stargardt disease.
According to their father, Todd Engle, the disease causes a harmful protein to build up in the back of the eye and does not allow for the removal of toxins that build up over time. The toxins kill the vision receptor cells that help visual stimuli reach the brain.
“It can happen at any time. My daughter’s situation started when she was in first grade … and then my son had problems in fifth grade,” Engle said. “Their vision has slowly gotten worse.”
Generally, the disease affects the center of a person’s field of vision. In Clayton and Rachel’s experience, their vision in that area is blurry or missing entirely.
Engle said the family has learned to cope with the situation ever since learning of the diagnosis. He said he got a call from his wife, Ann Marie, that he will never forget.
“At first, it was pretty devastating. I will never forget my wife’s call when she found out our daughter had it. It is hard to handle thinking they will never drive and how it will be for them just getting around,” he said. “Once we processed it all, we just realized we needed to get the tools to help them.”
That tool, Engle said, was a digital eyewear headset called the eSight, which uses a high definition camera and screens to display a real-time video feed to its user. When the children tested the device in December, the results were immediate.
“The device increases the magnification and contrast in what the user wants to see,” Engle said. “[Clayton and Rachel] were able to read like they had 20/20 vision across the room, which would allow them to see what a teacher is writing on the board … rather than having to absorb everything through listening.”
Engle, who is a technology education teacher at Jackson Liberty High School, said he knew how important the eSight device would be to Clayton and Rachel’s education.
Although the device was what the children needed, the $15,000 cost of each unit was prohibitive.
While Engle said he was willing to do anything he could in order to get his children the eSight, an unexpected avenue to do just that came in the form of Rachel and Clayton’s track and cross country teammates at the Goetz Middle School and at Jackson Memorial High School, respectively.
“When (Clayton) shot out the number of $15,000, we were all kind of taken aback. It was a bit intimidating at first,” said Jackson Memorial senior Justin Carlton, 17. “I suggested to the guys … that we create a GoFundMe account and they were all for it.”
GoFundMe is an online service that allows people to raise funds for specific needs, such as medical or entrepreneurial endeavors.
For Justin, who has known Clayton for four years, the desire to help his teammate was immediately felt by the Jackson Memorial track team.
“If we are on a run, we would always have to warn (Clayton) if a tree was coming up. We are always aware of it,” Justin said. “We just want to make sure he is safe and good.”
After setting up GoFundMe pages, the Jackson youths raised $23,000 in short order from hundreds of donors.
“To see this go from $0 to $23,000 is just incredible. We had more support than we ever expected,” Justin said. “We have a family bond here in Jackson; we always look out for each other.”
Engle said the support from his children’s teammates and the community has been an eye-opening experience.
“It was quite amazing, the generosity of people,” he said. “Clearly, in Jackson, the people are selfless … and again, my wife and I are humbled by what people have done for us.”
