Malakai’s Story: A Team of Experts Takes On A Mystery Illness
Malakai has always been a people person. His gregarious personality even earned him the nickname of “the Mayor” at his elementary school.
“He talked to absolutely everyone,” says his mom, Emily. “I was always so proud he never had any anxiety about being around people.”
But in the fall of 2018, Emily noticed changes in her typically happy-go-lucky son. He complained of severe stomachaches, joint pain, headaches, dizziness and a burning sensation on his skin. Over time, his symptoms became so severe that he was physically unable to walk at times, and was extremely withdrawn.
A host of tests at a local hospital confirmed Malakai had eosinophilic esophagitis (EoE), a condition where white blood cells collect in the esophagus, making it terribly painful and potentially life-threatening to process food.
Still, Emily had a hunch there had to be more to her son’s complete diagnosis. She called Lurie Children’s for more answers, where she was urged to make an appointment with Dr. Joshua Wechsler, an Attending Physician in Gastroenterology, Hepatology and Nutrition and CURED Research Scholar.
After meeting with Malakai, Dr. Wechsler confirmed it was unlikely that the wide-ranging symptoms could be caused by EoE alone. He put Malakai on a restricted diet to minimize some of his discomfort. Then, he began connecting the dots: He referred Malakai to a team of specialists at Lurie Children’s including a geneticist, a neurologist and a rheumatologist.
“That’s when the dominoes started falling and things started to make sense,” Emily says.
A geneticist diagnosed Malakai with a connective tissue disorder known as Ehlers-Danlos syndrome hypermobility that caused joint pain and burning sensations on the skin. A neurologist gave the diagnosis of POTS dysautonomia, a condition that affects the body’s blood flow, causing dizziness. As for the allover pain Malakai was experiencing, a rheumatologist diagnosed him with amplified musculoskeletal pain syndrome/chronic widespread pain.
“Surprisingly, Malakai’s collection of symptoms is being increasingly recognized among patients with eosinophilic gastrointestinal disease,” Dr. Wechsler says. “Screening for these symptoms is critical along with multi-disciplinary assessment and treatment to optimize the response.”
Still, a pressing question remained: What could be done about the pain?
Dr. Wechsler referred Malakai to the Pain Management Center at the Shirley Ryan Ability Lab, where he worked with doctors to establish coping mechanisms to manage his pain. With his team of doctors, Malakai set two goals: To manage his pain well enough to go back to school, and join his school’s Drama Club’s winter production. Within a matter of months, and after a great deal of hard work and education, Malakai was able to sit through a full day of school again, and played a part in every production the Drama Club put on after school.
Today, Malakai is thriving, even when he isn’t feeling 100 percent, Emily says—and it’s all because of the team of experts who gave them much-needed answers. “Malakai is a fighter, and now we know what beast he is fighting,” she says.
“Dr. Wechsler gave us hope. He put the pieces together for us. His knowledge and thinking outside the box made a world of a difference for us. All along, we knew that he wanted the same thing we did: for Malakai to feel better. I have no idea where we would be without Dr. Wechsler.”
True to his outgoing nature, Malakai hopes that by sharing his journey with the world, he might be able to make someone else feel better. “He told me, ‘Mom, if I could help one other kid my age and give them hope, I want to share my story.’”
At 18 months, Rose was diagnosed with a genetic condition that she'd have to manage the rest of her life - Mosaic Turner Syndrome. Thankfully, her parents found immense comfort in the experts at Lurie Children's.
At 19 months old, Wesley was diagnosed with a rare, genetic disorder called Hunter Syndrome. His parents moved to Chicago to pursue the best possible treatment option - a revolutionary clinical trial with Dr. Barbara Burton.
Alexa Tannous, one of the physician assistants (PA) in the Heart Center’s cardiovascular and thoracic surgery, shares these details and more on the integral – and emotional – process of safely transporting these precious organs.