XENIA — Some Warner Middle School students held a two-week fund-raiser selling T-shirts with hand-crafted logos on the front. The group’s effort was focused on raising money for Duchenne’s Muscular Dystrophy research and treatment. The school has three students with Duchenne’s — a progressive muscle degenerative disease — while an older student attends Xenia High School.
The students are Landen Sparks, a seventh grader; Ethan Buford, a sixth grader; Tyrese Buford, an eighth grader; and Devin Schweller, a 10th grader.
Amanda Finnegan keeps busy helping her two boys — Sparks and Schweller — navigate through their daily struggles and helps them with homework, assignments, etc., and by the time the boys get home, they just want to “chill” and play video games.
“My kids did OK learning on-line, but they have very high social anxiety and don’t like to be around people so they didn’t mind staying home,” said Finnegan, who drives her wheel-chair bound boys to school every day.
Sparks, 13, and Schweller, 15, like to play video games “more than anything” according to their mother. Although there is no cure for Duchenne’s, physical therapy and medications such as corticosteroids, can help control symptoms and improve quality of life.
“They can’t do sports but they like watching football and baseball,” said Finnegan, who added they will “most definitely” be watching the Super Bowl this weekend. “Their lives are very challenging. Landen would like to walk again but can’t, while Devin, my oldest, uses his wheelchair as little as possible.”
Finnegan said it’s usually a genetic disease where women are mostly the carriers, although it frequently appears in young boys usually between ages 2 and 5.
“It causes muscle loss that gets worse over time,” she said. “DMD damages the muscle needed for movement. It can also weaken the heart muscle and make the heart enlarge (dilated cardiomyopathy).
Trista Clelland and sons Ethan and Tyrese are grateful for the eighth-grade WEB (Where Everybody Belongs) leadership class for choosing Duchenne’s as its fund-raiser. The class was able to raise $800 for the Dayton chapter of the Muscular Dystrophy Association (Cure Duchenne’s), a cause which was formerly featured on the Jerry Lewis telethon, Labor Day weekend.
“The students decided to bring awareness to Duchennes this year. Students interviewed us and presented our family in a slideshow that was shown to the student body right before Christmas,” Clelland said. “Now they are considered Warner Middle School “heroes.’ I am also grateful to my daughter Shyanne, 12, she is a big help.”
Shyanne helps gets her brothers ready for school and helps prepare meals and drinks for them.
“My sons no longer have the ability to walk,” Clelland said. “Although they are both in wheelchairs, they are still mobile from the waist up.”
Clelland also said her sons have other delays besides mobility and are starting to lose their mobility as well.
“The school has been a big help. I’m not equipped to be their speech therapist, physical therapist, occupational therapist, or adapted P.E. instructor,” said Clelland, who acknowledges her sons are 85 percent dependent on her to help them get dressed, brush their teeth, etc. “The school has special buses and aides in the classroom. There are special needs classes to help — every student has an aide that helps them with their regular classes and they still get to participate in exploratory classes (such as health, art, etc.) and both boys are in choir and enjoy playing the new Nintendo Switch.“