BATH — Lily Wright will wrap up 2018 raising money to battle a disease confronting two people near and dear to her.
When tasked with choosing an advocacy project for her health class at Bath Middle School, the Woolwich seventh-grader chose to tackle Parkinson’s disease. Two of Wright’s grandparents – Jenny Wright of Bath and Tim Carnes of Yarmouth – have grappled with the degenerative nervous system disorder for at least a decade, and the 13-year-old is sure a cure exists for them and millions of others around the world.
Wright first decided to raise $500 to benefit the Michael J. Fox Foundation for Parkinson’s Research, four years after she and her family hiked up Mt. Washington in New Hampshire for the same cause. Bolstered by sponsorships from friends and family, she ran a 5K through the pouring rain Nov. 3 at Lost Valley in Auburn and has so far raised $580.
Wright has now set her sights on pushing that goal to $700, which she will do Monday, Dec. 31, in the 5K Polar Bear Dip and Dash, an event that will take her around Portland’s Back Cove and into the frigid waters off the city’s East End Beach.
Those who want to support her cause can donate at fundraise.michaeljfox.org/tf-2018/lilyfightspd or call Wright’s parents at 443-9278.
“My grandparents struggle with basic everyday tasks like walking, writing and even dressing themselves,” Wright said on the nonprofit’s website. “I wanted to start raising money because I’ve seen their abilities change over time. It makes me sad to see them not doing things that they’d like to do. I’m proud of them (and) I want to honor them and raise awareness.”
First characterized by James Parkinson in 1817, the disease’s symptoms include unusual stiffness in body parts, uncontrollable tremors when a limb is at rest, cognitive impairment, mood disorders, speech and swallowing issues, and problems sleeping, according to Fox’s website.
Between the 5K and running into the water at the end, Wright is most apprehensive about the latter. Her father does a New Year’s Day plunge into Nequasset Lake in Woolwich, but wading into the water is something else entirely.
“Wading in must be really hard, because you’re like, ‘oh my God, it’s so cold,'” Wright said with a nervous laugh Dec. 20 during an interview alongside BMS health teacher Maria Newcomb.
Newcomb’s class spent a semester focused on advocacy skill projects, “so at the beginning I encouraged them to choose something that they’re passionate about,” she said. “Because they’re going to be spending quite a bit of time working on it. Lily obviously chose something that she’s really passionate about.”
“To see her take this and run with it, literally, is really exciting,” Newcomb added. “Because these are things that she can continue to do throughout her life.”
That passion has pushed Wright through less-than-ideal conditions.
Running that first 5K in a downpour, “I was like, ‘oh boy, it’s gonna be tough,'” she recalled. “But I told (my grandparents) about it, and they cheered me on. Even though they weren’t there, all throughout the race I was (thinking), ‘I’m doing this for them. I’m raising money for them.'”
The sentiment kept her going through a cramp early on, and the never-ending mud, to finish second place in her age group – undoubtedly welcome news to her grandparents.
“I think I cheered them up when I told them about that,” Wright said with a smile.
Lily Wright, right, a seventh-grader at Bath Middle School, with health teacher Maria Newcomb. Wright will run her second 5K, and take a dip in Casco Bay, on New Year’s Eve to raise funds for Parkinson’s disease research.