'She truly was my hero'

Harper Pursley loved a good dad joke.

"She could rattle them off," her mom, Chelsea Pursley, said Wednesday. "She had a repertoire of 20 jokes she could rattle off at any time, and her comedic timing was perfect."

She loved fairies, sparkles and the color purple. She loved baking and rooting for the Denver Broncos with her dad, Chance.

Most of all, she loved her family, friends, classmates and community.

And they all loved her right back.

"She was an amazing sister and an amazing friend," Chelsea said. "She had an amazing support system of the people who loved her."

Harper, 11, of Rathdrum, died Feb. 1 after a long battle with ROHHAD syndrome, an extremely rare disease only 200 people have ever been diagnosed with.

"Harper’s been declining over the last six months or so," Chelsea said. "I had an idea she was not feeling up to it. I thought this was the last year we would have her."

The family had a normal day Jan. 24.

"She had a great day at school, went to practice with her brothers, she was having fun and dancing," Chelsea said.

That night Harper, who was also epileptic, had a 30-minute grand mal seizure that left her in an unresponsive state.

"She didn't wake up after that," Chelsea said.

ROHHAD syndrome — rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation — affects respiratory control, the autonomic nervous system and the endocrine system.

Those who have this condition appear to be healthy before rapid weight gain occurs, which is what happened before Harper was diagnosed when she was 4.

"She started to gain weight, she was falling asleep everywhere, her hands were clammy, she started to get anxiety," Chelsea said.

She took Harper to her pediatrician and they reviewed different symptoms and syndromes. It wasn't until a sleep study was conducted that it was revealed her oxygen levels dramatically dropped as she slept, which was a red flag to the doctor, who happened to attend medical residency with the doctor who named the disease.

She soon had an event at home and was taken to Seattle Children's Hospital via Life Flight, where it was confirmed she had ROHHAD syndrome. Chelsea said the diagnosis only took three months, when in most cases it takes much longer to pinpoint.

"The diagnosis takes three years because it affects so many parts of the body," Chelsea said. "We really lucked out with her primary care doctor."

Harper spent countless hours in doctor's offices and hospital beds, enduring tests and recoveries from eight surgeries. She would be in the hospital for weeks at a time, going home for only a few weeks before having to go back.

Through all this, the little warrior never complained.

"She was so happy. She had no ill thoughts toward anybody. She was kind and caring," Chelsea said. "I don't know how she could go through everything she had to go through and be kind every day.

"She really truly was my hero. I looked up to her."

Harper was beloved by her entire school community. She was a fifth grader at Betty Kiefer Elementary in Rathdrum, where Lakeland School District Assistant Superintendent Lynn Paslay was her principal from kindergarten through third grade. Harper's mom works as the treasurer of the school district, so staff members enjoyed getting to know Harper through the years. 

Paslay said, after her death, Chelsea came to Betty Kiefer to check on Harper's friends and grieve with her school family because Harper would have wanted her to be with them.

"Her capacity to love was beyond this world, and she made everybody feel that way," Paslay said. "She really was a special little girl."

Just after Harper started kindergarten, and staff were configuring her school health plan, Paslay said Harper told them, "You guys are my team."

"We always said, 'We’re on the Harper team,'" Paslay said.

Staff then made purple unicorn "Hope for Harper" shirts that everyone in the school wore one day a week.

Paslay said Harper was never mad, she never hurt anyone's feelings and she was known for greeting everyone in the mornings with a smile and a handshake. 

People couldn't help falling in love with her, Paslay said.

"She showed you grace and love and that you were the most special person in her sphere," Paslay said. "I just honestly love her. She is the best version of a human I've come across."

Chelsea said her daughter was a bright light in this world.

A celebration of life will take place at 11 a.m. Feb. 18 at the Hagadone Event Center, 984-986 S. Floating Green Drive, Coeur d'Alene.

"I’m sure it’s going to be packed," Chelsea said.

    Harper Pursley in seen in spring 2023 with a quilt made by her classmates and teachers at Betty Kiefer Elementary School. Harper, 11, died Feb. 1 after a six-year battle with ROHHAD syndrome, an ultra rare disorder that affects multiple systems in the body.
  

    Chelsea Pursley kisses her daughter Harper goodbye after Harper passed away Feb. 1 at Sacred Heart Children's Hospital in Spokane following a long battle with a rare syndrome. A celebration of life will be held Feb. 18 at the Hagadone Event Center.