Benjamin's Story

Ben was a perfectly healthy and active 12-year-old boy - full of energy, playing sports and living his best life up until June 2019. All of a sudden, Ben started experiencing nausea, dizziness, headaches, double vision and he was unsteady on his feet. Our pediatrician sent us to the ER where a CT scan and MRI showed multiple lesions on Ben’s brain. He was transferred to Detroit Children’s Hospital’s Intensive Care Unit. Every test imaginable was performed, including removal and biopsy of one lesion. Doctors were baffled as every test came back inconclusive of a diagnosis. Ben spent 32 days in the hospital that summer. He was given a diagnosis of ADEM, then possible T-Cell Lymphoma, and then CLIPPERS. Ben was placed on high-dose steroids, had monthly MRIs, and was unable to return to school that year.

The medical team wasn’t completely convinced CLIPPERS was the diagnosis. After reaching out to physicians at Birmingham Children’s Hospital in the UK, Boston Children’s Hospital, and Cincinnati Children’s Hospital, it was decided that even though symptoms were not the traditional HLH symptoms, genetic testing should be done to rule out HLH. 

In October of 2020, 16 months after the initial symptoms appeared, Ben was diagnosed with Primary CNS Hemophagocytic lymphohistiocytosis (HLH), a life-threatening condition. A condition in which the immune system doesn’t know when to shut off and therefore attacks healthy organs. In Ben’s case, the affected organ was his brain. The treatment for Primary CNS HLH is a bone marrow transplant. 

In November 2020, the search for a donor began and Benjamin started chemo treatment in preparation for transplant. In January 2021, we received the good news that a 10/10 match was found. Then in February 2021, Benjamin underwent a bone marrow transplant using the cells donated by this unrelated donor, our forever hero. She is truly an earth angel.  

This experience turned our world as we knew it upside down. No patient should have to wait 16 months for an official diagnosis of HLH. We’ve met several families along this journey, some waited a couple of months while others waited years. Those months or years were spent taking steroids. Steroids control the symptoms, but they wreak havoc on your body. As a family, we decided we needed to advocate for other families. We feel strongly about raising awareness of HLH within the medical field and the community to help patients rule out or confirm HLH in a timelier fashion. The Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families with histiocytic disorders. They are working to raise awareness of HLH and they’re funding research to improve the diagnosis timing and treatment of HLH.

2023 UPDATE:  Ben will be celebrating his 2nd Re-birthday on February 26, 2023! Ben's a sophomore this year, working hard to keep up with his           homework. He joined the Key Club, a club that does volunteer work. Ben earned all his volunteer hours last semester by labeling swab kits   for the Be the Match registry. He's also working to improve his golf game, enjoys working out at the gym, and he's saving money for a car by working a busboy at Kruse and Muer on Main.  We are so thankful for how well Ben is doing now!