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4TH OF JULY CELEBRATIONS: Find out “What’s Happening” PAGE 7
4th-grader benefits from groundbreaking gene therapy BY DEBRA NEUTKENS STAFF WRITER
flight team was doing 20 or 30 events a year. “We do funerals with missing man formation at Fort Snelling,” Datko said. “We started doing professional sporting events, the Vikings, Twins, University of Minnesota, University of Wisconsin, University of South Dakota and the Green Bay Packers.” Datko, of Coon Rapids, is a retired business owner. He has owned a variety of airplanes over the years. His hangar at Anoka County Airport in Blaine has housed a Piper Cub, Piper Apache, Boeing Model 75 “Stearmen,” Piper Cherokee and an L-29 Delfin Jet Trainer, just to name a few. But the aircraft that was most closely
Living with a genetic disease that robs young boys of muscle function has not stopped 9-yearold Brecken Kinney. Diagnosed with Duchenne muscular dystrophy (DMD) just shy of his third birthday, Brecken could be one of the lucky boys afflicted with the neurological disorder. “Call it intuition, but something didn’t seem CONTRIBUTED right,” recalled Brecken’s Born with Duchenne mom, Marit Sivertson. muscular dystrophy, “Brecken was delayed Brecken Kinney, 9, was with crawling and part of a groundbreaking walking and frequently clinical trial to treat the tripped, which are all disease. symptoms of DMD. He wasn’t able to move the same way as other kids at the playground.” About one in 3,300 male children are born worldwide with the rare and fatal disease, which is extremely rare in girls. They lack sufficient dystrophin, a protein that helps keep the body’s muscle cells intact. Without it, muscles progressively weaken to the point those with the deadly disease are bound to a wheelchair, usually by age 12. Heart function and breathing are also affected. Life expectancy is mid-to-late 20s. There is no cure. But there is hope. After Brecken’s parents received his diagnosis, the Mahtomedi couple began a diligent search for treatment and care. What they found was an experimental gene therapy offered at Nationwide Children’s Hospital in Columbus, Ohio. It was 2019, Brecken was 5. He was one of 40 boys in the world accepted into a groundbreaking clinical trial that may have saved his life. “What is so incredible about this therapy is Brecken looks and acts like a normal kid. While his peers with DMD at this age are beginning to lose the ability to walk, he plays soccer, swims and dives and is walking up stairs (difficulty climbing stairs is another sign),” Sivertson said. “His peers are declining but because Brecken was blessed with this opportunity to be invited in this gene therapy trial, he is thriving.” Sivertson, a health law attorney, and her husband, James Kinney, a software engineer,
SEE T-6 THUNDER, PAGE 21
SEE GENE THERAPY, PAGE 13
PAUL DOLS | PRESS PUBLICATIONS
The T-6 Thunder flight team is coming back this Fourth of July. The team has performed hundreds of fly-overs for over 20 years at various events in the Twin Cities area, Minnesota and Wisconsin.
T-6 Thunder to fly on the 4th of July BY NOELLE OLSON EDITOR
The T-6 Thunder flight team will be busy this Fourth of July. “The Fourth of July is crazy,” said Chuck Datko, pilot and founder of T-6 Thunder. “We'll be in Forest Lake, Rice Lake, Wisconsin, Chetek, Wisconsin, flying over Stillwater, and at the parades in Apple Valley and Chanhassen. Then we polish it off at night in White Bear Lake.” According to Datko, the T-6 aircraft was first introduced in 1940 and built by North American Aviation. There were 22,000 of them built between 1940 and 1945. They were also licensed to be built in Canada. The T-6 Thunder began in 1995 when Datko and another pilot were asked to do a fly-over in a parade.
“We did that, and it was a hit,” Datko said. “Then somebody talked to somebody else and the next thing you know, we had two and then three of them.” Datko organized a group of other T-6 and SNJ (Navy version of the T-6) pilots in the area to fly in formation at airshows and other aviation events in 1996. “Back then there were 14 aircraft and 16 pilots in what I would call the extended area from Fargo, North Dakota, to Mason City, Iowa, to Eau Claire, Wisconsin, to Aberdeen, South Dakota,” Datko said. “These are all privately owned aircraft, and these guys were all scattered around.” The wife of one of the pilots suggested the name “T-6 Thunder” and it took off from there. By the year 2000, the
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