Coming downstairs to see what the last mischief the family Elf on the Shelf got into the night before has become a regular part of Ashlyn Perkins’ routine.

It is usually followed by a day at school learning and swapping stories with friends.

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As the sun goes down, the 8-year-old and her brother Braylon take to the driveway to compete in a friendly game of basketball.

It’s a new sense of normal for the child whose life for the past four years has been anything but.

Ashlyn recalled difficulty sleeping was the first major sign something was wrong.

“I just started waking up like 3-4 different times, like every hour,” Ashlyn said.

Her mother Julie shared a trip to the doctor the following day led to an unexpected discovery. Her daughter had cancer.

“An ultrasound showed a mass on her kidney,” Julie said. “They said you have about an hour to go home and pack, and we’ll call the emergency room and they’ll be waiting for you.”

Ashlyn has neuroblastoma but was originally misdiagnosed with Wilms Tumor, a rare kidney cancer.

Doctors didn’t discover the error until roughly two months later after she had undergone six rounds of chemotherapy that hadn’t been effective.

“It didn’t help even one second,” said Ashlyn. “After I threw up one time like five minutes later, I’d throw up. “

Julie shared Ashlyn “had a feeding tube and didn’t eat.”

Braylon said he remembers not being able to understand why his sister was so ill.

“I was home with my Dad and I’d always just ask him if I could call her,” he said.

The family consulted with Memorial Sloan Kettering. The hospital is known for its cancer center and pioneering neuroblastoma research.

Julie shared Ashlyn was to enroll in a clinical trial, but the family didn’t know how they could afford to get her to New York City.

 “My husband was already unemployed due to the pandemic,” said Julie. “He worked for a small restaurant, and it closed down immediately so he had no income. I had quit working to take care of her, so I had no income. We had no money, all we had was a plan.”

That’s when another family told the Perkins about Children’s Flight of Hope (CFOH).

The Raleigh-based nonprofit provides free air travel and support for pediatric patients and one accompanying parent or guardian.

“I applied and it was so seamless. I think I got the call that same afternoon that they approved us,” said Julie. “They booked the flights for us, and it was just one less thing I didn’t have to worry about. I didn’t have to worry about looking up flights or anything, they just took care of it all.”

CFOH President and CEO Pat Nelli said the goal is to reduce the financial burdens for families so the patient and their support group can stay focused on healing.

“We believe distance and the cost of travel should never be barriers to get to the specialized medical care they so desperately need,” said Nelli. “When we fly the child, we’re treating the whole family.”

The nonprofit started with a group of private pilots offering up their own time and planes to transport kids. It has since grown to include commercial airlines with trips in all 50 states.

“Our North Carolina roots are very strong and very deep but we do pride ourselves on the fact that we’ve grown to serve children all across the country,” Nelli stated.

Donations to the nonprofit also help provide care packages for patients with specialized items for those with neuroblastoma.

“It is really hard to explain the gratitude and the need that these families share with us. They are facing the darkest possible day that every parent dreads,” said Nelli.

She continued, “When you are a parent who is facing potential a terminal disease for your child, imagine how it must feel to know that better care is available, and you can’t afford to get there.”

Nelli shared some of their flights include bringing children to RDU whereas others involve children going elsewhere for care.

“Even if they live in major metropolitan cities, the specialist they need may not be close to home. Other of our children live in medical deserts so they also don’t have access to care,” she said.

It’s a financial burden Julie expressed gratitude for not having to carry.

“As of last count, they have provided over 120 flights for Ashlyn and I,” she said. “That was such a blessing. There was no way we could’ve afforded it.”

That count will likely increase by a few more as Ashlyn prepares to undergo her final round of treatment in May.

Her last injection was coincidentally scheduled for May 15th, 2025 – five years exactly from her initial cancer diagnosis.

“Had we not transferred our care, I don’t think she would be here,” Julie said. “The overall survival rate is between 40-60% and once you relapse it drops down to less than 5%.”

Ashlyn told WRAL, “I’m pretty sure I’m not going to get it again” as she showed off a locket she wears in honor of her friends who have passed away.

Inside the four-leaf clover, the child is seen smiling alongside her friends Olivia and Lucy who passed away after also battling neuroblastoma.

Photos of the girls also have a spot on the Perkins family Christmas tree. Julie said it’s a reminder of why they continue to fight and why they continue to have hope.

“Even then I know of neuroblastoma patients who have relapsed after 7 years, so it’s always a worry in the back of your mind,” said Julie. “One good thing is now we know Memorial Sloan Kettering is here and CFOH is going to help us get there. That takes a lot of the worry and burden off of my shoulders.” CFOH has provided over 24,000 flights to children and their accompanying parent or guardian.

Nelli said the nonprofit will provide over 2,700 flights in 2024 alone with the goal of 4,000 flights in 2026.

“We see an exciting path ahead of growth because we know the need is great and we want to meet it. The challenge is making sure we have the resources to sustain our growth and to make sure we live into our commitment to fly children for the duration of their journey,” said Nelli.

Those who wish to support Children’s Flight of Hope are asked to donate online.