BV senior Kaleen Carlson finds inspiration from her twin, Keegan

Born with Centronuclear Myopathy, Keegan Carlson doesn’t let it keep him down

Keegan and Kaleen Carlson, seniors at Bureau Valley High School, have twin telepathy, their mother, Tammy said. Keegan, who was born with Centronuclear Myopathy, is his sister's biggest fan.

WALNUT - Kaleen and Keegan Carlson, 18, of Walnut, are your typical twins with like minds and thoughts that only twins have.

“They have twin telepathy,” their mother, Tammy said. “Lot of little things that they’ll say without even being in the same room and same thoughts and same ideas.”

However, their life paths have taken them in different directions.

Kaleen is a senior athlete for the Bureau Valley Storm basketball, softball and cross country teams.

Keegan was born with Centronuclear Myopathy, a condition characterized by muscle weakness and atrophy in the skeletal muscles.

He is wheelchair bound with a trach and ventilator to help keep him breathing more comfortably.

While he can’t play, he goes to every one of Kaleen’s games and keeps a close eye on her every move on the basketball court for the Storm.

He is undoubtedly Kaleen’s biggest fan and often her biggest critic in a loving way. Like most siblings do, he likes to give his sister a hard time.

“I think it’s cool,” she said. “I feel like sometimes he could be jealous of me playing sports and him not being able to, but he actually gives me motivation to want to do better.

“I know after games, he says, ‘Oh, you did really bad and stuff like that.’ I know he actually cares and wants me to get better.”

When asked how his sister played in the recent Princeton game, Keegan responded in the way only he can, “Bad.”

“He’s always giving me pointers and telling me to keep my head up,” she said. “He always jokes around, ‘Oh, the other team sucks. You’ll play fine.’ I know he’s always actually rooting for me even though he plays hard to get sometimes.”

“She knows he’s always going to tell her what she should have done,” Tammy said. ”He’s always giving her a hard time about the game and telling her things she should have done. Always trying to coach her.”

“He has had so many obstacles and so much that has happened and never once have I heard him complain about any of it,” she wrote. “It is inspiring to see and know what he goes through. We are twins, we have grown up together, and we have a close bond.”

—  Kaleen Carlson

For her BCR Senior Spotlight, Kaleen didn’t hesitate to say that Keegan is the person with the greatest influence on her life.

“He has had so many obstacles and so much that has happened and never once have I heard him complain about any of it,” she wrote. “It is inspiring to see and know what he goes through. We are twins, we have grown up together, and we have a close bond.”

“They’re very, very close. Kaley’s very supportive of Keegan. She’s very helpful of Keegan and he’s her biggest fan,” Tammy said.

The Miracle Boy

While Keegan was born with Centronuclear Myopathy, he was not diagnosed with the disease until he was 9 years old.

“We knew what to call it then,” Tammy said.

Centronuclear Myopathy is a rare disease and there’s no known cure.

Keegan is nothing short of being the Miracle Boy.

“We were told by Mayo he is the oldest living patient that they have on record,” Tammy said.

Keegan was given a trach and a mobile ventilator in 2017 to help him breathe easier as it became a struggle to survive. The ventilator is equipped with a homemade heater to allow him to be mobile rather than bed-ridden, as most patients are.

“They decided basically he was skin and bones, because his body was burning so many calories just trying too breath,” said his father, Scott. “They felt that if they put the trach and ventilator in it would allow him sleep better at night. And actually it did. He started gaining weight.

“He’s not strong enough to take a deep breathe. Taking little bitty, shallow, short breathes is enough to keep him going.”

“They said him breathing every day is like you and I just trying to run a marathon,” Tammy said. “So he would never be able to recuperate at night to turn around and do that marathon again. So most children with this disease pass in infancy.

“He had the trach and vent put in 2017, and now here we are in 2022. So, I would say that he’s still a pioneer and chugging along.”

Social butterfly

Keegan’s condition doesn’t keep him quiet. Bureau Valley AD Brad Bickett said he’s the biggest trash talker in school.

His mom said he’s a social butterfly because he’s always talking and finding ways to communicate with his friends and family.

“He’s got his phone and when he’s at home, we really don’t know what he’s doing over there, but he’s texting people all night long, right and left,” Scott said. “I see people, ‘Oh Keegan was texting me last night.’ I’d say, ‘What?” Yeah, he’s texting me all the time.’’

He’ll use any means to coach his sister.

“The other day he was texting with Kaley, telling her, ‘You need to back into (the defense). Dribble backwards into them and shoot left or right. Fake and then shoot,’” Scott said.

Keegan Carlson (center) of Walnut was rewarded with a "Make a Wish" trip to see his favorite football team, the Dallas Cowboys, in the fall of 2017. He was joined by his mother, Tammy, father, Scott, and his twin sister, Kaleen, while meeting Cowboys players Dez Bryant (88)  Jason Witten (back) and Dak Prescott.

Big Cowboys fan

The Carlson family are all big fans of the Dallas Cowboys. Keegan was rewarded with a Make A Wish trip to Dallas in 2017 and got to have lunch with former Cowboys coach Jason Garrett and meet Jason Witten, his favorite player, along with Cowboy stars Dez Bryant and Dak Prescott.

Keegan has his personal headquarters set-up at home with his PlayStation and various TV monitors to watch the Cowboys games. His TV always seems to be about five seconds ahead of rest of the family’s.

“He’s over there ringing his bell and the next play (we see) will be what he just watched. If it’s a good play, he’s over their ringing his bell and making noise and ruining it for us,” Scott said. “For some reason, he’s always five seconds ahead of us.”

Keegan was not especially pleased with the season-ending playoff loss which saw the Cowboys run out of time with no timeouts remaining.

Future plans

If it was up to Keegan, he would “retire” from schooling and stay home. His parents are going to talk to Sauk Valley College about having him take a few classes.

“He’s a big gamer, so he said maybe he’d like to do something with graphic design or something with game design, something he’d like to do,” Tammy said.

“He’s a social butterfly. I said you can’t retire after high school. You’ve got too many people to talk to. He’s a people person.”

Kaleen would like to become a respiratory therapist and already has a good foot in the door after helping taking care of Keegan, her dad said.

Wherever their paths take them, the twins will always be connected. That’s what twins do.