Phyllis and Ted Kovall know what it takes to win a race. Ted is the president of the Yough Trail Council, a western Pennsylvania bike trail that spans 23 miles. Phyllis is a competitive runner who does 5K walking treks through her neighborhood five days a week.
These retired teachers know that it takes hard work, determination, and staying focused on the goal. And that’s exactly how they plan on winning their biggest race yet – a race against time.
Time is precious for their seven year old granddaughter, Finley, who is losing her sight.
Phyllis said her daughter, Jennifer, knew something wasn’t right when Finley was two years old. She explained, “Jennifer mentioned that Finley was falling often. There were things she was tripping over and she and other people noticed that Finley wasn’t looking straight at them.”
After visits to a pediatrician, optometrist, and ophthalmologist didn’t provide answers, the family was referred to a retinal specialist.
Phyllis said the doctor told Jennifer, ‘I think she has Lebers Congenital Amaurosis (LCA). She will go blind. I’ve given you this terrible diagnosis. Do you have any questions? ‘You tell me how we can make her life as best as it can be,’ was Jennifer’s response.”
Her determined resolve and strength would set the tone for how this family would deal with this new reality.
“We are not losing Finley. We’ll just have a different life with Finley.” That’s what Jennifer said to her mother-in-law, when she learned of the LCA diagnosis.
Jennifer is a school district nurse. Her husband, Mat, has a PhD in genetic research. “If Finley had to have this, she had the right parents,” Phyllis remarked.
A One in a Billion Chance
According to Phyllis, only 3,000 people in the United States have LCA. Boston Children’s Hospital wanted to do genetic testing to see if she had the defective RDH12 gene of LCA. There would be a one in a billion chance both parents had the RDH12 gene.
“Only 85 people in US have this genetic form of LCA and as the testing confirmed, Finley is, in fact, one of them,” she said.
After the diagnosis in 2010, Jennifer and Mat attended a conference where they met four other parents whose children had this rare form of the disease. They decided to form their own 501c3 organization, the RDH12 Fund for Sight, to raise awareness and the funds needed for a cure.
Since then, several of the families, including Finley’s, hold their own annual fundraising events to benefit the non-profit organization.
Funding the Cure
Ted and Phyllis held the family’s first fund-raiser that summer in their back yard. “We came up with the name “Finley’s Fighters…working to knock out blindness” and put up 12 tents with food and activities,” she said.
The event was so successful that it had to be moved out of the back yard and is now held annually at Yough River Park, along the Yough Bike Trail in Connellsville, PA. It’s become the Finley’s Fighter’s 5K/10K Race complete with a DJ, food and auction items, as well as children’s activities. In the past four years, the races and fundraisers have raised over $100,000 with every penny going to fund research.
Rallying to Support the Cause
Students in the Connellsville Area School District, where both Ted and Phyllis spent their careers respectively as music and substitute teachers, have joined the cause and compete every year to design a tee shirt for the race participants.
The high school’s Student Council Homecoming committee chose Finley’s Fighter’s as their charity beneficiary and members sold chain links. Finley got to visit students in their classrooms and a school-wide assembly was held to present Finley with their donation to the RDH12 Fund.
CAHS National Honor Society got involved too by holding a spaghetti dinner at the Connellsville Area Career and Technical Center, where culinary students prepared the meal. “It was a cold night and people were lined up outside. While 130 tickets were sold, 450 people showed up. We ran out in the pouring rain to buy more spaghetti,” Phyllis said with a smile.
Elementary schools as well a number of other local organizations also rallied to support the cause. And after stories appeared in the newspaper on the events, Ted and Phyllis received letters starting with…”You don’t know me but I want to give…”
Finding the Cure
The overwhelming support is making a difference. A researcher has discovered a way to stop progression of the disease and is ready to go into clinical trials. Now, it will take two things to make it happen – time and money – both of which are running short for Finley.
Through the combined fundraising of members of the RDH12 Fund, one million dollars has been raised so far. However, it will take another $1,500,000 to move it into the clinical trials phase. And LCA is a progressive disease. “We’re fighting time. We have to stop it. Finley has only 10% vision left. Most of the teenagers who have it don’t have sight.
For now, she can still see us. Our hope is that her sight can stay where it is and all children affected by this disease can be helped,” she said.
Adapting Amazingly Well
Phyllis commented that Finley’s elementary school had never had a visually impaired student, so they were initially unprepared for ways to assist her. However, Finley’s mom is her advocate and has helped to educate and acquire the educational tools needed to maintain her independence and to succeed in school.
Finley is adapting amazingly well. The second grader has a classroom aid at school and is taking occupational therapy to teach her to use a white cane. “She’s learning Braille and when her classmates, trying to be helpful say, ‘We’ll do it for you, Jennifer says “no”!”
The Race is On
Finley’s Fighters 5K/10K Race fundraising events will take place this year in three locations – Littletown, MA, Connellsville, PA, and for the first time, in Pittsburgh, PA where Ted and Phyllis’s son AJ (Andrew) and his wife Tricia have joined forces to put on an inaugural race at North Park on Sunday, April 27th, as a warm up to the Pittsburgh Marathon. Both AJ and Tricia are high school teachers and their students have jumped on board to support their upcoming event.
“We feel so lucky. So many people have come out of the woodwork to support Finley and we have researchers working exclusively on stopping the disease,” she said.
Finley has to be feeling pretty blessed too. She has a remarkable family that includes Ted and Phyllis as her grandparents. And she has a community that won’t stop fighting to give her the chance to see the beauty that is all around her.
“People who Inspire” is a series to shine a spotlight on people who have done extraordinary things. If you have experienced a great adventure, survived a life-threatening illness or trauma, overcome obstacles in achieving a goal, or have made an impact on someone’s life, I’d love to hear from you to share your story. Email me at firstname.lastname@example.org so that we can inspire others to be unstoppable in the pursuit of their goals.