Dr. Kimberley E. Steele serves the LGDA and LMI as Director of Patient-Led Research. She has shared the story of Michael’s diagnostic journey, her perspective, and the video Michael made to tell his story.
When Michael was just turning 6 years old, I received a call while at work that Michael had a high fever. It was unlike any “kid” fever that Michael had had in the past. Michael’s fever was unrelenting, and he became weak, complained of bone pain, he developed extensive bruising. He was found to have low platelets, but Michael’s physicians could not establish a diagnosis. Michael endured many tests and procedures and encountered numerous specialists, all puzzled by his constellation of symptoms.
While on family vacation and playing with his brother, Michael accidently bumped his head. Within 24 hours he was hospitalized with a severe expanding cephalohematoma (bleeding under the scalp) and disseminated intravascular coagulopathy (low platelets and clotting factors resulting in easy bleeding). He spent 8 days in the hospital receiving blood products and significantly challenging the doctors on the pediatric hematology service. Finally, a whole-body MRI led to a diagnosis. Michael had a an extensive and diffuse lymphangiomatosis.
As a physician, I was able to reach out to colleagues, who directed her to Boston Children’s Hospital and Dr. Denise Adams. Dr. Adams confirmed the diagnosis of Kaposiform lymphangiomatosis (KLA).
It has been quite a journey ever since. While much of this time has been daunting, there have been many positives along the way. I have learned how resilient and strong my sons are, how the diagnosis has not prevented Michael from enjoying every day, and just how important family is.
As a physician and mother, I have seen both sides of patient care.
As a clinician, I am grateful for my understanding of medical care and the ability to quickly obtain care for my son. At the same time, I am cognizant of what parents and family without medical background must endure as they navigate the healthcare system.
As a researcher, I have witnessed how experts sometimes work in silos, unaware of opportunities for collaboration or held back by time constraints, competition, or lack of resources.
As a mother, I understand that parents will do anything to help their child. In my case, this translated into advocating and sharing Michael’s story, spreading the word, and asking for help. The result was amazing as Michael demonstrated the “Power of One”: how one little boy can bring experts together and overcome barriers in pursuit of a cure.
In Michael’s words, “I hope that my story will encourage people to donate money and support research. It is for kids like me, Michael P., so that kids can stay strong for the good times to come with our family and friends”.