BY MIKE WARREN
EDITOR

MARSHFIELD — A Marshfield native and his family are dealing with one of the rarest diseases known to mankind, and a local fundraiser April 20 is being used to help offset some of their medical bills.

Jace and Grady Binder were born July 6, 2011 to Dustin and Erin Binder. Dustin is a Columbus Catholic High School graduate originally from Marshfield, Erin is from Dallas in south-central Barron County and the couple and their three sons live in Eau Claire.

The couple’s two oldest sons, Jace and Grady, were recently diagnosed with an extremely rare disease called Pantothenate Kinase-Associated Neurodegeneration. PKAN is a rare genetic disorder that affects 1-3 individuals per million worldwide, and causes iron accumulations in parts of the brain that control motor function and progresses over time. 

“Grady and Jace are twins and they’re identical, so they both carry my gene that was affected and Dustin’s gene that was affected,” Erin Binder told us during an April 10 interview. The couple’s younger son, eight-year-old Owen, is also a carrier.

PKAN affects one’s ability to walk, talk, eat, breathe and all muscle function. 

“What happens is the brain isn’t able to remove the iron from the brain, so the iron is getting collected in the motor function part of the brain, and that’s where you’ll see Parkinson-type symptoms,” Erin explained to Hub City Times. “They’re off balance, it’s hard for them to chew, there’s Dystonia, or muscle contractions, which can be very, very painful. They’re on high doses of pain medication when they get to this point. They were kind of able to run when they were younger. Now they need our assistance to walk. They can do it by themselves, but we are there to watch them because they will fall, usually it’s always backwards for them.”   

Erin said she first noticed something was wrong when Jace and Grady were babies.

“I feel like I noticed issues when they were young. They were kind of unconsolable when they were born,” she said. “They did kind of grow out of that, but they still had very bad tantrums.”    

By the time Jace and Grady were three, the Binders noticed the twins were not keeping up with other kids, and were “kind of clumsy.” By the time the boys were nine, Erin said it was evident there was a problem.

At first, doctors suspected Developmental Coordination Disorder, but several rounds of genetic and other tests showed nothing definitive. Then, further genetic testing at Gillette Children’s Hospital and Clinics in St. Paul, MN uncovered the family’s rare gene history.

There is no known cure for PKAN, but the family is hopeful some promising research leads to positive genetic therapies. They have been in touch with Dr. Susan Hayflick, a medical geneticist with Oregon Health & Science University who has studied PKAN for 30 years, and who says new therapies could be as close as five years off.

The family was recently met with another obstacle, when Mayo Clinic Health System announced the closures of Prevea Health clinics in the Chippewa Valley, where Jace and Grady – now sixth-graders – were going for physical, speech and occupational therapies.

An April 20 fundraiser for the family will help cover their medical expenses and equipment that insurance does not cover, which is expected to exceed $250,000. 

The fundraiser is being held from 10 a.m. to 5 p.m. at Bakerville Sports Bar and will feature a cornhole tournament, silent auction items, bake sale and 50/50 raffles. The cornhole tournament is accepting 48 two-person teams at a cost of $50 per team. For more information, contact Chad Breitzke at 715-305-7766.

The Binders have also set up a Go Fund Me page, which can be found by searching for “Miracles for Grady and Jace.”