Kellan Tilton has a lot on his plate.
The Maine native is working to convince lawmakers to support a bill funding childhood cancer research as he focuses on improving his skills on the slopes and keeping an eye out for sports he’s yet to master.
Up at 5:30 a.m. and asleep by 7:30 p.m., he keeps especially long hours — for a 6-year-old.
"I just do it," Kellan said, shrugging when asked where he gets his energy.
Nothing can stop him: Not inclement weather, not stubborn minds that are hard-pressed to change, and especially not his wheelchair.
"He's totally showed me that where there's a will, there's a way," his mother, Elizabeth Tilton, told InsideEdition.com. "He has a zest for everything he does and he really has no fear."
The day Kellan was born was a joyous one.
“We’re a blended family; my husband had three children and I had three children, and together we had Kellan,” Tilton said. “We had this beautiful home birth and he was born surrounded by all his siblings, but as soon as we got him out of the water, we realized he wasn’t moving from the waist down.”
Kellan was born with neuroblastoma, cancer often found in the small glands on top of the kidneys. The dangerous growth developed on his spine and spread to his abdomen and internal organs.
“He started chemotherapy right away,” Tilton said.
After four rapid-fire rounds of chemo, Kellan underwent a 9-hour tumor reduction. He continued treatment and then moved on to checkups every three months. Eventually those checkups were lessened to occur every six months, and finally, after five years, he reached a major milestone and was classified a survivor.
But he never gained the ability to move his legs.
"We kind of say that from the waist up, he’s a rock star," Tilton said. “He’s so strong, so capable; it’s just from the waist down, that’s where all the challenges are."
However, it’s a challenge he meets head on every single day.
“Just this morning, he got himself up, got himself out of bed, all the way down the stairs, found his wheelchair and got the toy he wanted to play with," his mother said. "He’s super self-sufficient and has a really great, go-getter attitude."
That positive outlook has come in handy as Kellan works to master new skills, like skiing.
"When he was still an infant, I called adaptive sports organizations and was like, 'I need to know what this kid is going to be able to do,'" Tilton recalled. “I had never been in the realm of special needs before so I sort of needed a crash course and I needed someone to talk me off the ledge. They said, 'This kid’s going to be able to do whatever he wants to do and it’s just going to be a little bit different.'"
So, the Tiltons set out to ensure their son would be as active as the rest of the family and when he was 4, he began skiing lessons.
"Winter in the wheelchair is the worst," Tilton said. "Wheelchairs do not go in the snow. To be active outside in the wintertime for his first four years were tough. But we got him on that mountain for the first time and it was just miraculous."
Kellan, it turned out, had a knack for navigating the slopes.
"He has no fear," Tilton said with a laugh. "The faster, the better. It’s crazy to watch him."
Outfitted with a monoski and poles that help him keep his balance, Kellan is seated as he flies down hills and executes jumps, video of him shows.
And his skillset has earned him a fan base.
"A group told me, 'We saw this child go over a jump in the terrain park and we couldn’t help but cheer,'" his mother said. “The amount of fist bumps and high-fives he gets, it’s this incredibly motivating environment."
Kellan’s positive outlook has also influenced his advocacy work as an ambassador with the St. Baldrick’s Foundation, with which the Tilton family became involved as they researched their baby’s condition.
“They’re the largest private funder of pediatric cancer research; they’re on the cutting edge," Tilton said. "They’re doing what needs to be done to find a cure and they’re following these kiddos so they not only survive, but they thrive."
The Tiltons remained involved with the foundation even after Kellan was declared cancer-free, and last year, the little boy decided to take his work to the next level.
“He spoke to a representative, because we needed our reps and our senators to be aware of the need for funding,” she said. “Kellan has always been a kiddo who’s articulate and likes to tell his story. We let him answer because I think it’s important for him to have his voice heard. This is his story and this is his journey and he needs to be able to articulate that.”
Having someone who knows firsthand the need for research that leads to a cure and better care for those who are living with the aftereffects of potentially harmful treatments makes all the difference, Tilton said.
“When you meet Kellan, you see what cancer has done,” she said. “He’s always going to have these challenges of paralysis and negotiating the world in a wheelchair. It’s important we tell our story and have his face out there and be an advocate.”
Kellan is currently working to see the passing of the Childhood Cancer Survivorship Treatment Access and Research (STAR) Act, which supporters say is the most comprehensive childhood cancer bill to ever make it to Congress.
The bill focuses on maximizing childhood cancer survivors’ quality of life, moving childhood cancer research forward and improving access to life-saving treatments. It passed in the Senate on Thursday and has moved on to the House of Representatives.
"These treatments that have saved these kids, they have lifelong effects," Tilton said. "The chemo Kellan had as an infant... It’s toxic. We have to do kidney ultrasounds frequently. We have to check his heart. He lost the high tones of his hearing from one of the chemo (treatments). We needed to do this in order to save his life, knowing that he was going to have these lifelong effects."
She went on: "We’re the lucky ones — he survived. We will live with what has happened through having these treatments. But we need to not only find cures, the best cures, but we also need to follow these children and make sure they are thriving."
It’s a hefty undertaking, but Kellan is up for it. After all, trying is half the battle, he tells those learning to ski.
“I tell them, 'Eyes straight. You don't have to go fast. You can go slow if you want... just go on the bunny trails,'" Kellan said. "Then move up!"