Skip to main content.

Ben's Story


Ben was a healthy, happy 6th grader who loved baseball and fishing! On June 11, 2019, Ben was playing baseball when we noticed him stumble on the field a few times. Then we watched him over through 1st base. Ben said he was tired and feeling ‘weird’. The next couple of days, these symptoms worsened. He was off balance, had a headache, and was vomiting. Upon failing the finger-nose test, our pediatrician sent Ben to the ER for a CT scan, revealing several lesions on Ben’s brain. He was transferred to Children’s Hospital of Michigan’s PICU, where he stayed for 9 days while every specialty examined and ordered tests on Ben.

He was placed on steroids, which shrunk the lesions and resolved his neurologic symptoms. He was discharged after 2 weeks with the diagnosis of ADEM. All his symptoms returned a month later, with the addition of double vision. Ben was readmitted and they performed a craniotomy with tumor resection. The pathology report came back, inconclusive by Children’s and the NIH, but suggestive of Peripheral T-Cell Lymphoma..

Ben was treated with Dexamethasone. The lesions and symptoms resolved once again. He was slowly weaned off steroids, He did well for 4 months, but in March 2020, all his symptoms returned with new symptoms of slurred speech and head bobbing. Steroids were started again, and he was given the diagnosis of CLIPPERS. We consulted with a physician from Dana-Farber who suggested getting genetic testing for HLH. Through a CLIPPERS support group, we were put in touch with a doctor from Children’s Hospital in Birmingham, UK, who also suggested genetic testing for HLH. Sixteen months after Ben’s symptoms appeared, he was diagnosed with Primary CNS-Isolated HLH. He had a BMT in February 2021 and has been doing well ever since!

If you'd like to make a donation to this event in honor of Ben, please click on the donate button below. Thank you.