Thanking the community
Ethan Cook, who lost the majority of his sight due to a rare optic nerve disease, was very humbled by the community rallying together to raise over $17,000 for his drug trials in New York City. Glover photo
WINCHESTER – Last year, 15-year-old Ethan Cook was sadly afflicted with a rare optic nerve disease that resulted in the loss of the majority of his sight within the short span of a few months.
“What it causes an issue for, is mostly reading things on the blackboard in class or I can’t look at a computer screen and read the text on it or read a newspaper,” said Cook. “So, I have to use certain technology to make the text bigger. I usually only have one word on the screen at a time, instead of a full page like a regular person. In every day navigation, I don’t have to use a cane.” He went on to say that the vision loss seems to have slowed down, noting, “the vision is doing fine, I don’t notice any degradation from it, it’s not getting worse.”
Cook began treatments for his vision loss approximately two months ago, starting with nine appointments over the span of 25 months. The good news is that Cook was accepted to participate in a drug trial that will take place over the course of two years; unfortunately, it’s only available in New York City.
“We started the medical trial around the end of February, beginning of March,” said Cook. “So, we did one appointment,” he has been prescribed pills, “and I also have appointments every couple of months. There’s going to be nine appointments over the next 25 months.”
Cook continued, “It’s a trial for a drug that is illegal here in North America, but they’ve legalized it for this purpose in Europe and it’s in an FDA medical trial to try to get it legalized in the United States. For the next two years, they’re providing me with the medication and allowing me to bring it across the border. It gives me the opportunity without hassle.”
However, travel costs and other expenses related to Cook’s treatment are a real burden on his family’s finances. Thankfully, Winchester’s Lions Club spearheaded a campaign that included a pancake breakfast Sat., April 20 to raise funds for Cook’s cause, garnering a total of $17,500.
“It wasn’t a matter of us choosing Ethan’s cause to help, he is a remarkable young man who is losing his eyesight,” said Shawn Doolan, secretary treasurer of the Winchester Lions Club. “It’s something the Lions Club does, which is help people in his situation. It was the natural thing to do.”
Cook says that he is simply humbled by the support from the community and that he’s in disbelief how much everyone has come up to the plate to help him through such a difficult time in his life.
“It’s humbling, it’s really super humbling. It’s really hard to handle the gratitude that people are giving me and how inspiring they keep telling me I am,” he said. “It really touches my heart. It’s a great feeling to have so many people on my side after all the support and help.”