Jumo Health has been the premier Champion Sponsor at the International Children’s Advisory Network (iCAN) Annual Summit for the last three years. This incredible event unites families and healthcare professionals worldwide for a week of sharing stories and ideas aimed at enhancing the global understanding of pediatric patients and their needs.
At this year’s summit in Italy, we had the privilege of meeting Michelle Burgess, a passionate advocate for patient-centric care. Michelle’s mission is to support parents of children with disabilities and emphasize the critical importance of self-care. She shared her journey, underscoring how parents often neglect their well-being while caring for their children, leaving both the parent and child vulnerable.
Michelle’s story is particularly profound. In 2008, just four days after the birth of her fourth child, Michael, she and her husband were told their newborn son had sickle cell disease. After diagnosis Michelle and her husband engaged with doctors and read extensively about sickle cell in order to become well-informed regarding their son’s condition. Then, in 2022, when Michael was 14 years old, Michelle was rushed to the hospital in critical condition, fighting for her life. A sepsis infection had gone untreated, sending her into septic shock and causing her heart and kidneys to fail. At the same time, her husband was being asked if she had a DNR (do-not-resuscitate order); their son, Michael, was experiencing a severe sickle cell crisis that put him in the hospital as well. Yet, despite these overwhelming challenges, Michelle and her husband managed to focus on both her recovery and Michael’s care.
“I think parents that have children who are living with disabilities and challenges, we put ourselves on the back burner because we’re trying to be there for them. Ultimately, that is the worst thing you can do because you are making yourself vulnerable and that child vulnerable if you do not support and care for yourself.”
While talking with Michelle, she highlighted the crucial need for parents to seek support and prioritize their well-being to care for their children effectively. She also addressed the complex decision they faced regarding clinical trials for Michael, noting her initial fears because of the historical harm done to the African American community through clinical trials. However, faced with Michael’s increasingly low hemoglobin, they chose to enroll him in a trial, which led to significant improvements in his health.
Michelle’s advocacy now focuses on educating parents about the importance of clinical trials and improving diversity within them. We are incredibly grateful to have heard her story firsthand.
Jumo Health develops age-appropriate, culturally relevant, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 80+ countries in 120+ languages. Our various digital, video, and print offerings use highly visual elements and research-backed health literacy strategies to ensure that everyone can understand and act upon complex medical information. We do this through familiar mediums – from comic books and animation, to virtual reality experiences and authentic documentary-style patient stories – all customized based on audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to promote access and to ensure unique patient experiences are accurately represented.
