Mighty Blog

Kellen fights back after rare spinal cord condition triggers his body to attack itself

On a cold December evening in Bemidji, Minnesota, 13-year-old Kellen stood on the starting blocks at his local pool ready to swim for his school’s team. The teen’s parents, Heather and Philip, proudly watched from the stands as their son returned to the sport he loves. Unlike the many swim meets and triathlons Kellen has participated in throughout his young life, events like this race are now a time of reflection for his parents after a life-changing diagnosis. Just eight months before that night’s race, Kellen began a brave battle with a rare spinal cord condition that stole his ability to walk, play sports or even easily move his fingers.

“Watching Kellen swim now with his able-bodied peers is a reminder that he continues to face challenges and disabilities that may very well exist forever,” Heather said. “His positive attitude and grit have got him as far as he has come so far.”

Kellen’s long care journey began in April 2023 when he came down with what started as a seemingly routine bug that led to several emergency room (ER) visits at his local hospital. Kellen’s health soon declined to the point where he could not even stand. Searching for answers, it become clear to his doctors that he needed to be transferred to Children’s Minnesota in the Twin Cities for advanced care.

A rare diagnosis discovered at Children’s Minnesota

Kellen’s family made the 220-mile trip from Bemidji to Minneapolis by ambulance as the medical helicopter and fixed wing plane were both grounded during a blizzard hitting most of Minnesota. There, The Kid Experts® at Children’s Minnesota discovered Kellen had a rare spinal cord condition called acute flaccid myelitis (AFM). AFM strikes suddenly and weakens muscles. Kellen also tested positive for both tick-borne Powassan virus and mosquito-borne Jamestown Canyon virus. These rare viruses may be what triggered Kellen’s AFM and caused his spinal cord to swell as his body tried to fight off the infections.

“It is unknown why some viruses sometimes trigger AFM,” Heather shared. “There are a lot of unknown questions about the condition as it is so uncommon.”

Kellen spent seven weeks in the pediatric intensive care unit (PICU) at Children’s Minnesota. During this time, Kellen’s multi-disciplinary team of pediatric specialists closely worked with his family to develop a care plan. Time was of the essence as Kellen now had little to no movement in most of his body. He needed a ventilator and tracheotomy to breathe, and a feeding tube to eat – but Kellen refused to give up.

Tireless work and forged bonds

Kellen embarked on a long journey with the physical therapy (PT), occupational therapy (OT) and speech therapy programs at Children’s Minnesota. After he received treatment to bring down the swelling, his family learned movement therapies are the priority treatments for AFM patients, the 13-year-old spent countless hours with his OT Jeanna Sommer and PT Mackenzie Dwyer.

“The therapy team bonded with Kellen in his darkest moment over a shared love of sitcoms and comedy,” Heather said. “Making this connection with him resulted in an instant trust and bond.”

Kellen persevered through an intense two-plus month regiment of PT and OT twice a day. What started with Kellen only wiggling his toe or twitching a muscle progressed into him once again sitting, standing and dressing himself. Through his hard work, Kellen could soon eat without a feeding tube and move on his own with the help of special medical support equipment. Eventually, the teen was cleared to continue the next phase of his recovery at a different health system.

Mackenzie Dwyer (left), Kellen and Jeanna Sommer (right)

“I have never seen a kid work as hard as Kellen despite all the many challenges he faced,” Kellen’s OT, Sommer, said. “Working with Kellen was the first time I have ever had to tell a patient that their home exercise program is to not do anything else that night and rest up.”

Now back home in Bemidji, Kellen is walking, gradually re-gaining the ability to run and back on his school’s swim team.

A special reunion

Just six months after AFM triggered Kellen’s body to attack itself, the teen experienced a full circle moment at a popular marathon in his hometown. Both Sommer and Dwyer ran in the race and Kellen surprised them by walking on the marathon course near the pair. The two therapists had a surprise of their own too – they wore shirts with a funny running quote on them from one of Kellen’s favorite sitcoms. Just like most sitcoms, this story also had a happy ending when Kellen presented his Children’s Minnesota therapy team with their marathon medals.

“We encountered so many amazing staff at Children’s Minnesota that we will forever remember and be thankful for,” Heather said as her son continues with his recovery. “The depth of relationship and connection we have with our physical and occupational therapy team at Children’s Minnesota is something that we think about and feel gratitude for on a regular basis.”

Kellen featured in People

Read People’s story about Kellen’s remarkable recovery here.

Dwyer (left), Kellen and Sommer (right) at the marathon