Meet Michael: 2022 Family Advocacy Day Champion
Michael is participating in Speak Now for Kids Family Advocacy Day from June 12-14. Through this event, Michael and his family will discuss his health journey, Ann & Robert H. Lurie Children’s Hospital of Chicago’s role in providing him with necessary health care services, and why the public and our elected officials must invest in the future of patients like Michael.
At one week old, Michael’s family knew they had a long battle ahead when he was diagnosed with sickle cell disease.
“It was a devastating experience since we had lost a child at a very young age,” says Michelle, Michael’s mom.
Michael has needed many treatments throughout the years, including blood transfusions and procedures to see if he has any brain development issues. Pain management is key and ongoing. He is also being considered for drug treatment trials.
“Michael is dealing with this condition until a cure is found,” says Michelle. “He was hospitalized in May 2022, for example, and every day could be different. It all depends on how his body responds to treatment.”
While the family’s insurance is good and covers most issues, there have been a few procedures they haven’t covered—or have threatened not to. This often leads to finding alternative care.
“There is also a therapeutic drug insurance which will not cover,” says Michelle. “Because it's sickle cell disease, the advances and research are not as strong as with cancers.”
Today, Michael is an athletic boy who loves to play baseball and video games.