CLARENCE, N.Y. — Coping with terminal illness and loss is difficult for any family, but it can be even harder when it’s a child.

“I talk to Sophia all day, every day,” said Kristina Benintende. “I feel like when I do ask questions, she sends me signs, and I'm like, ‘Okay, got it, stop doing that, or, all right, let's continue with this.’”

It’s an experience the family of Sophia the Fierce had to endure and continues to deal with to this day.

“A lot of what people write in here kind of bring like a new light to us,” said Benintende, Sophia’s mother, as she opened a book of notes left at her daughter’s grave.

Nine years will never be enough for Sophia’s family to ever feel like they had enough time.

“Never in a million years did I think that I would have to come here to visit my daughter,” said Kristina.

At just 7 years old, Sophia was diagnosed with Ewing’s Sarcoma, a rare cancerous bone tumor.

“It's just crushing,” said her mother.

They made the most of their time, making memories, taking trips, and even starting Sophia the Fierce Inc. to support respite, research, and relief for other warriors.

“Sophia was so strong and her mindset — she never, ever thought anything negative. Or at least she didn't show us,” said Benintende. “Thinking back on that, I think it was her protecting us.”

They never gave up hope.

“The doctors told us over and over again, this is not good. She has a less than 5% survival rate. And this was when she relapsed,” recalled Benintende. “We just kept on fighting.”

On May 9, 2023, Sophia passed away. She was one of 53,000 kids who die of a chronic, life-threatening condition every year in the U.S., according to the World Health Organization.

“Come June, the silence was just in the house. Everything changed,” said Benintende. “I thought about her and how much she wanted this foundation to work and all the plans that she had. And we said, ‘We're going to carry this on.’ ”

That organization continues to grow.

“That's her actual handwriting,” Benintende said, pointing at a quote on custom shoes created through Soles from Sophia, a recent addition to the organization. “We actually found this after she passed away.”

Through Sophia the Fierce Inc., heartbreak and healing go hand in hand.

“There are times it's very, very difficult,” Benintende noted. “I'll hold my tears back when I'm talking to a parent and then when I hang up, I just let it all out. My heart feels for them.”

But Sophia’s legacy isn’t just in her organization. It’s the little things, too.

“You have to say their name every single day,” added Kristina.

It’s about finding forgiveness for things that weren’t anyone’s fault.

“You start to blame yourself sometimes, you know, ‘Well, what if we would have made this decision instead of that decision,’ ” said Benintende. “You have to stop the what-ifs, because with cancer, it's going to take its path.”

She said it's also about learning to welcome back joy and moving forward without moving on.

“You can still smile. It's still OK to laugh, even if you go home and you cry after you laugh,” she added. “The one thing I can say is don't feel guilty for that, because your child would not want you to stop living because they stopped living.”