Heroic boy defies medical odds

Posted on November 2, 2015 By Editor Junior Residents

Sometimes the most heroic thing a person can do is fight for his own life. That’s what Luke Akerstrom of Ortega Forest did when he was five years old.

On Dec. 31, 2010, Magnus and Brandi Akerstrom’s son suddenly went into a catatonic seizure. He was admitted to Wolfson Children’s Hospital where he was initially treated for two types of spinal meningitis, and for an unusual and complex encephalitis – swelling of the brain (possibly caused by the meningitis).

Two months later, after several types of treatments, five types of therapies, and painful plasma exchanges, Luke had not improved; in fact, he had gotten much, much worse. The muscles in his left arm were so tight he could not move it, while his right arm had to be confined to prevent erratic, non-stop movement.

Clad in a purple plaid button-down shirt with trendy denim jeans, Luke Akerstrom, 10, strode down the runway at the Southern Women’s Fashion Show.

Luke turned six the February he was in the hospital, and was surprised with visits by Jacksonville Jaguar Brad Meester and his wife Jamie, Ryan Robinson, Jaxson deVille and a ROAR cheerleader. Two weeks later, President George W. Bush took time to visit Luke, also.

“The first time I met Luke he came out of a grueling therapy session at the hospital. It was so tough he was bawling,” said Meester. “But when he came out and saw us, he had a huge smile on his face.”

Meester and his family returned to the hospital over and over to encourage Luke.

“His spirit and energy had such an impact on us,” Meester said. “We complain about problems, but they are so small compared to what he went through — and he kept such a positive attitude.”

In early March 2011, after 67 days in the hospital, the family, including three-year-old brother Abram, made a trip to the Mayo Clinic in Rochester, Minnesota to consult with a specialist in rare and unusual cases.

Dr. Marc Patterson spent three hours – unheard of – with the Akerstroms, listening and reviewing all of the MRIs and CT scans. Brandi Akerstrom said, “He looked at us and said, ‘I know what this is. I have seen this before.’”

“This” was a disease so rare that only a handful of children around the world have been diagnosed with it; so rare there’s not a neurologist in the entire state of Florida who has ever seen this, said Akerstrom, who prefers not to share the name of the disease.

Now armed with the name of the condition, the real fight began. The outcome was discouraging, but the Akerstroms’ faith was so strong they were confident Luke would surprise everyone, including Dr. Patterson. Even Abram said to his mother, “Luke is alive and broken. God will fix him right up.”

Toward the end of March 2011, Luke was making huge milestones in improvement at Brooks Rehabilitation – taking baby steps as he relearned to walk, beginning to speak again. By early May, he was able to leave the hospital for a few hours at a time; then on May 18 he was discharged to continue his healing and therapy at home.

For the remainder of 2011, Luke continue to defy the odds. On Oct. 10, he did what doctors had told the Akerstroms couldn’t be done – he walked, surprising everyone when he made it into the arms of Meester, and then to the center of EverBank Field to perform the coin toss for a Jaguars’ game.

Jacksonville Jaguars center Brad Meester hugs Luke Akerstrom, 6, as players and coaches applaud after practice at NFL football training camp, Aug. 4, 2011. Meester and Luke became friends after Meester’s visits to Wolfson Children’s Hospital and Brooks Rehabilitation eight months after Luke began having seizures.

Despite his improvements, in 2013, Luke again traveled out of state for another medical referral with more specialists for new medication and focus on rehabilitation. Only the seventh child worldwide with his diagnosis, Luke had a long, hard road of therapy in store.

Luke, 10, attends fifth grade at St. Mark’s Episcopal Day School and continues to defy the odds. “He is truly one of God’s miracles,” said Akerstrom. “Although he still receives therapy twice a week at Wolfson Rehab, he is successful in school and a member of the Robotics Team.”

Last month Luke modeled a hip outfit at the Southern Women’s Fashion Show to benefit Dreams Come True; all the models were local dreamers. He wore a purple plaid button-down shirt with trendy denim jeans.

“I just want to help all the sick kids. Being in the hospital is no fun. Kids just want to play and not worry about treatments,” said Luke, who received his “dream” in 2012, a Disney cruise. “I will always help Dreams Come True. They help me, too.”

“For Luke to try to give something back even if it is something as small as walking down a runway means a lot to him,” his mother said. “Dreams Come True has really done so many wonderful things for our family over the past four years. There isn’t a way to ‘pay them back’ or even express in words a thank you, for the words aren’t strong enough to convey how we feel. So, participating in any and all fundraisers is all we can do to show our appreciation.”