Minn. Family’s Super Hero Powers Battle Genetic Disease
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ALEXANDRIA, Minn. (WCCO) – The Roseths are not the first family to wish for super power when battling a terminal disease.
But they take their wish quite seriously.
The Roseths are part of a group called “Real Life Super Heroes.”
Their arch nemesis: a genetic disease that runs in their family.
Their courageous fight might make you think twice the next time you question super powers.
The Fearsome Four is comprised of 11-year-old Patrick (known as “Super Sergeant”), 8-year-old Benjamin (known as “Powerboy”), 7-year-old AJ (known as “Pink Lantern”), and 6-year-old Norah (known as “Little Tornado”).
Each child has a persona that mother Brandy Roseth says is customized to near perfection.
The inspiration behind their super powers came when Brandy learned of a little known group with a big impact.
“There’s actually a movement of Real Life Super Heroes,” Brandy said.
They are real people who take up arms to help others.
“They are your nurses, they are your doctors, they are just anyone that suddenly says, ‘I don’t want to stand this anymore,’” Brandy said.
Displayed at the family’s home is what they call their “Wall of Fame.”
“You can see different super heroes have signed things to try to encourage the kids,” Brandy said. “This says, ‘To Powerboy, stay powerful brother!’”
It’s Powerboy who perhaps relies most on his super strength.
“When he would go through tests, when they would be drawing blood, he’d be crying, and we’d say, ‘You can power through, you can power through,’” Brandy said.
Ben has a condition called ALD. His parents didn’t know the genetic disease ran in their family until all four children were born.
ALD causes neurological problems similar to a stroke. Gradually, nerves can no longer transmit messages, and speech and movement stop.
“His muscles in his legs have turned to rocks sometimes, and he can’t bend them, he can’t move them, he’ll scream,” Brandy said. “He’ll be screaming that it hurts and he can’t do anything about it.”
Because of the pain, days will go by, sometimes several, without Ben sleeping.
Most children die within a decade of their diagnosis.
Norah, better known as “Little Tornado,” has a more mild form of the genetic disease with less severe symptoms.
“I don’t like bein’ sick. It makes me sad,” Norah said.
The “Fearsome Four” seem to take on the pain of one another.
“I’m really sad when he gets to the hospital. Because he gets surgery,” Norah said.
“I love him a lot and I can’t stop getting a crush on him,” AJ said.
Like any good superhero, they know how to turn bad into good.
“I always buy flowers for him,” AJ said. “He loves roses. Don’t tell him.”
Behind the laughs is a mother, who behind closed doors, can’t help but question her own super power from time to time
“I want to yell, I want to scream inside, but I can’t,” Brandy said. “There is just no way I can let all that out. Even if I could scream until my lungs and my throat are sore, there’s absolutely no way that would ever relieve what I feel inside.”
This super mom has no choice but to keep her own mask on.
“I feel like every time I turn around, I should just break apart, and I can’t,” Brandy said. “So no matter how much I want to, I have no way to do it.”
On the walls of the Roseth home is a poster that reads, “The courage to fight … and the power within.”
It’s a metaphor even an 8-year-old can understand. He’s fighting a disease, his worst enemy that literally lives inside of him.
“Having the super heroes has given them something to believe in in themselves, and it has given them something to believe in out there,” Brandy said.
Unconventional as it may be, allowing her kids to play super hero, day after day, is this mom’s way to heal her children’s pain and her own.
“My dad and my mom love me a lot,” Ben said.
“To me, they are my heroes, when I want to fall apart, when I want to stop, they’re the reason I keep going,” Brandy said.
Brandy said Ben visits the Mayo Clinic every three months for several days of treatments. He takes steroids to help with the pain.
If you’d like to learn more about the “Real Life Super Heroes,” click here.