As the Argyle community gears up for Swing Time, a dinner and dance event benefitting research and education for Duchenne Muscular Dystrophy, two families watch the clock tick down on the days that their sons will continue to walk or even breathe on their own.
Michael Hope, a 12 year old at Argyle Intermediate School, and Corbin Fanning, a first grader at Hilltop Elementary, are facing different stages of Duchenne, but their families share a common hope that a cure for the disease will be found.
Duchenne is the number one fatal genetic disease that takes boys’ lives in their early 20’s and although it affects one in every 3,500 boys, just in the Denton County towns of Argyle and Aubrey alone there are 6 boys stricken with this disease.
“Lives are stolen by this disease every day,” Michael’s Mom, Tricia Hope, said. “People need to be educated about this disease so that more money can be given to research. Without research, there will be no cure. Without a cure, Duchenne will continue to rob young boys of their lives.” Read more about Michael Hope’s story here.
For the second year in a row, the Hopes and Fannings have again joined with Argyle United Methodist Church to sponsor Swing Time, where families will dine and dance to the big band sounds of the Argyle High School Jazz Band.
The event will be held Sunday, March 27, from 6:00-8:30 p.m. at Argyle UMC on Hwy. 377. All proceeds will benefit Parent Project Muscular Dystrophy, a group that is leading the front in Duchenne research.
Duchenne, a degenerative disease that results in progressive muscle weakness and loss of strength, eventually leads to serious medical problems with the heart and lungs.
Duchenne is the most common fatal genetic disorder diagnosed in early childhood. When most boys are diagnosed, they are able to run and play like other children. However, the older they get the more the muscles are unable to rebuild and repair themselves and the less active they become. Many are wheelchair bound by the time they exit elementary school. The effect of the disease is not just limited to mobility, but affects all muscles including the upper body, heart, and breathing function.
Corbin’s diagnosis came after his four-year checkup, where doctors tested his movement and activity levels, followed by blood work. “Our whole world was totally changed,” Mrs. Fanning said. “Our dreams for him completely changed. It is still hard to swallow right now because his symptoms are so mild, but as he progresses, so will the disease.”
Mrs. Fanning and Corbin’s father, Chris Fanning, sold their two-story house and moved into a one-story to eliminate stairs from their son’s routine. They went from encouraging activity to limiting it, and changed their outlook for their family’s future.
“This diagnosis means we have to adapt to the changes as they happen and focus on living each day to the fullest,” Mrs. Fanning said. “We are just trying to soak up every minute with him.”
Like Corbin, Michael was diagnosed with Duchenne at an early childhood check-up. His parents had expressed concerns that Michael was falling frequently and not running or jumping like his peers. As they learned more about Duchenne, the Hope’s feelings of frustration grew.
“I was devastated,” Michael’s father, David Hope said. “I couldn’t believe the lack of research and trials for Duchenne. I was upset.” The Hopes immediately began researching, volunteering and fundraising.
“We needed to fix this and keeping ourselves busy was our way of coping,” Mrs. Hope said. “Our hopes and dreams for our little boy had just been crushed.”
Duchenne research currently costs $85 per minute. The staggering price tag makes fundraising critical for families whose sons have been diagnosed with the disease.
“These are real kids with real hopes and dreams,” Mrs. Hope said. “Our boys’ lives are 100% dependent on the doctors and scientists involved in research. If people better understand what Duchenne is and how it impacts families, they will understand that research is imperative.”
Last year’s event raised over $16,000 for research and organizers hope they can do even better this year.
“We were amazed at the outpouring of support from Argyle and the surrounding communities. It was incredible to see how much people cared for our sons and our mission to save them from this horrible disease,” said Mrs. Fanning.
“The Argyle Band was dynamic and the Denton Swing Dancers along with the catered dinner and auction, made the event a huge fun-filled, family event. We wanted to do something a little unique that would appeal to all ages. What better than big band music to get everyone’s toes tapping,” said Lauren Anders from Argyle UMC.
“People will be rewarded by the fact that they helped this generation of boys, and those to come, fight Duchenne, Mr. Hope said.
For the Fannings, every dollar raised for research means more time for their son, and others fighting the disease.
“We will find treatment and a cure for all children with DMD,” Mr. Fanning said. “It will just take money, and time.”
For more tickets to Swing Time and information about the event, visit www.argyleumc.org. For more information about the fight to end Duchenne Muscular Dystrophy, visit www.PPMD.org. Argyle United Methodist Church is located at 9033 Fort Worth Drive, Argyle Texas 76226. Phone: 940-464-1333.