Hope for Harper
Courtesy photo Chance and Chelsea Pursley of Rathdrum enjoy time with their children, Harper, 4, and Gunnar, 2, in this family photo. Harper was recently diagnosed with ROHHAD syndrome and will be treated in Seattle and Chicago. Her family and friends are hosting a benefit Saturday at O’Malley’s in Rathdrum.
By DEVIN WEEKS
Staff Writer
The lives of a young Rathdrum family changed forever this fall when their little girl was diagnosed with an extremely rare and life-threatening disease.
Harper Pursley, 4, was taken to Seattle Children's Hospital via Life Flight after having a seizure. Doctors diagnosed her with ROHHAD syndrome (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation), a disease so rare it only affects 75 people in the entire world.
ROHHAD disrupts the body's ability to breathe, depriving organs of much-needed oxygen. Harper's body is losing control of her hypothalamus, which controls metabolic processes and other activities of the autonomic nervous system. ROHHAD is incurable and potentially fatal.
"It is so sad to see this happen to anybody," Alisha Watson, a close friend of Harper and her family, said Wednesday.
Harper's friends and loved ones are working to raise at least $20,000 to offset the medical expenses ahead. Her treatment will be conducted by a team of specialists in Seattle and Chicago.
Harper's parents, Chance and Chelsea, grew up in Rathdrum and graduated from Lakeland High School. Chance served as a combat veteran who was deployed to Iraq with the 82nd Airborne Division. The high school sweethearts have Harper and her little brother, Gunnar, 2.
Watson, who has known Chance and Chelsea since elementary school, said Harper is a one-of-a-kind kiddo.
"It doesn’t take more than a minute around her to see that she has a really special spirit," Watson said. "Even with everything that's going on, her spirit has still stayed the same to a certain degree and that is so amazing to me."
A benefit for Harper will be held at O'Malley's Sports Bar and Grill, 13742 W. Highway 53, Rathdrum, at 1:30 p.m. Saturday. The event is open to all and will feature a dinner and silent auction.