3 ND Brothers Suffer From Rare Neurological DiseaseGRACE CITY, ND (WDAZ-TV) - Three North Dakota siblings are all suffering from a neurological disease so rare that it affects fewer than 50 people nationwide.
By: Adam Ladwig, WDAZ
GRACE CITY, ND (WDAZ-TV) - Three North Dakota siblings are all suffering from a neurological disease so rare that it affects fewer than 50 people nationwide.
There is no cure yet, but the family does have a ray of hope.
Eleven-year-old Lane Kulsrud was diagnosed with PKAN in December. The disease causes iron to accumulate on the brain. It's genetic, so nine-year old Tanner and six-year-old Ty were also tested and face the same struggle their older brother does.
"A parent's worst nightmare. Never thought this would happen," Jay Kulsrud said.
Three otherwise healthy boys, all diagnosed with the same disease.
"It causes some neural problems with them. Slurred speech, falling, balance issues and comprehension," Laura Kulsrud said.
"It's hard dealing with those," Tanner Kulsrud said.
All they can do right now is slow the progress of the disease.
"Physical therapy, pool therapy and massage," Lane Kulsrud said.
"There is no treatment right now for it. There is an experimental trial out in Oakland, California this year," Laura said.
The drug in the trial has worked in the past for PKAN patients.
Community members rallied behind to family to host a benefit to help cover expenses if they get into the trial.
"Well they're our dearest friends and two of the boys are actually our Godchildren, and just, whatever they need of us, whenever they need it," family friend Lisa Longnecker said.
The family has fans in high places. North Dakota natives Travis Hafner and Jim Kleinsasser donated items to be auctioned off. Parents Jay and Laura Kulsrud say the outpour of support is vital in the struggle against PKAN.
"We've gotten cards from people that we don't know. Just words of encouragement. It's just been unbelievable. Thank you, thank you, thank you," Laura said.
"The community's been awesome. Unbelievable," Jay said.
They boys aren't in any pain from the disease. Their parents say they take solace in the fact that their boys can still act like boys as they fight the disease together.
"They run around like nothing's wrong with them and they don't act like nothing's slowing them down at all," Jay said.
Benefit organizers are expecting nearly 2,500 people Saturday at the Foster County Fairgrounds in Carrington, more than the entire population of the town.
There's also a benefit account open at Bremer Bank in Carrington. You can contact the bank to make a donation to the family.