Seventh-grader Cooper Boeckman doesn’t like to be in the spotlight. But on Jan. 31, the entire St. Francis of Assisi School community gathered to celebrate him — for good reason.
Cooper is one of 10 recipients nationwide of the National Catholic Educational Association’s Youth Virtues, Valor and Vision Award. The award recognizes “students in elementary and secondary schools who through selfless service, determination, innovation and ideals are changing the world while bearing witness to their Catholic faith,” according to the NCEA website.
In first grade, Cooper was diagnosed with Stargardt disease, a rare genetic condition that is slowly making him lose his vision. For the past few years, Cooper and his family have worked to raise awareness of vision loss and money for research — there is currently no cure for Stargardt disease — through events like the St. Louis VisionWalk, benefiting the Foundation Fighting Blindness.
Cooper was presented with the award at an all-school ceremony Jan. 31, joined on stage by his parents, Joe and Deb Boeckman.
“Cooper told (his mom) that he didn’t understand why he’s receiving the award because ‘I didn’t do anything special,’” Joe told the school. “But you know, Cooper, you’re an inspiration to me, because of how you carry your cross. And the cross is obstacles you might face — you don’t complain, you don’t make excuses — you just go about doing your business.”
The students, teachers and staff at St. Francis share in the honor of the award, too, Joe told them. “The cross is also carried by you guys…Just having friends and classmates, loving and caring for him, means a lot.”
Stargardt disease causes vision loss first through the weakening of central vision. Cooper is still able to participate in regular classes at St. Francis, aided by organizations including One Classroom and Lighthouse for the Blind, who have helped set him up with an extra-large Chromebook, an Onyx monitor and distance camera, an iPad for screen-sharing with classroom Smart Boards and a hand-held dome magnifier to read small type. St. Francis STREAM Coordinator Michael Herries, who nominated Cooper for the award, works with Cooper and his teachers to make sure everyone is seamlessly connected.
Since people might not know he has vision loss just by looking at him, Cooper doesn’t mind sharing about it with his classmates, he said. Last year, in a project-based learning class, Cooper created a presentation describing how Lighthouse for the Blind operates a manufacturing facility employing people with vision loss. In the fall, he invited some of his CYC soccer teammates to join him in the St. Louis VisionWalk.
“Everyone’s really supportive of me, even if they don’t know me or I’m not good friends with them — they still care about me and help me out with stuff if I need it,” Cooper said.
The way Cooper handles himself has been “a great inspiration to the other kids,” said St. Francis principal Beth Bartolotta. “It has made them more aware and more sensitive to other needs.”
As his classmates have grown up beside him, they’ve learned to be more attentive to opportunities to help out not just Cooper but anyone who might need something, Bartolotta said.
“It’s building their empathy, building awareness, building acceptance,” she said. “Having those children — not just Cooper, but our inclusion program in general — kids with special needs in a regular learning environment is a win-win on both sides. The kids who are learning alongside those children just become so much more aware, empathetic and understanding, and also inspired.”
Along with his two younger siblings, it’s important to just let Cooper be a kid, Deb said. “If he wants to try something, he tries it. That’s how we’ve always approached it…As a family, we don’t treat him any differently — he does everything.”
Since Cooper’s diagnosis, the Boeckman family has leaned on their faith and relationship with God. The family has a special devotion to St. Lucy, the patron saint of those with eye problems. And one of Cooper’s favorite parts of St. Francis of Assisi School is attending daily Mass. “It helps me get a fresh start to the day,” he said. “If something was going on yesterday, it just kind of wipes it away — it’s refreshing to me to go to Mass every day.”
“Cooper’s vision hasn’t gotten any better. But I think our family is closer, I think the community is closer, supporting Cooper, and I think we’re closer to God because of that, too,” Joe said. “We certainly found blessings in a situation that is not ideal for Cooper, but he’s a happy kid and living his life, so that’s what matters.”
Since Stargardt disease is genetic, Deb and Joe know there’s a possibility that their other children may have the condition, too, and will start to show symptoms later. But Deb holds on to the simple advice that she would give anyone finding out about a new diagnosis: “Everything will be OK. If you trust God and ask Him to help you, He will,” she said.
“One thing Jesus says to us is that all those who labor come to Him, and He will give them rest. And I think that’s what Cooper does,” Joe said. “We trust that the Lord has a good plan — whether we cure Cooper’s disease or not, God’s plan is good.”
Resources for children with vision loss
Lighthouse for the Blind: lhbindustries.com
Dealta Gamma Center: dgckids.org
SNAP program, through the Special School District: ssdmo.org/domain/116
One Classroom: one-classroom.com
Donate to the Coop Troop VisionWalk fundraiser, benefitting the Foundation Fighting Blindness: stlreview.com/3Htg7Ro