Hi Friends!
We’re excited to participate in the Miracles in Motion 5K again this year to support Johns Hopkins Children's Center oncology unit.
At the end of November 2023, Charlie experienced a medical emergency at home at just 8 weeks old. He was admitted for two months of testing, but doctors were unable to find a clear diagnosis. At the end of January 2024, Charlie was transferred to Johns Hopkins Children’s Center. The doctors quickly went to work to find a diagnosis. They discovered lesions on his spine, pelvis, femur, and humerus. Oncology was consulted and performed several biopsies.
With those results, they were able to finally provide a definitive diagnosis – infantile myofibromatosis (IM). Charlie had rare tumors wreaking havoc on his digestive system and bones, subsequently affecting his ability to breathe on his own. The team went fast to work researching and developing a treatment plan.
After 224 days; 11 rooms; 4 floors; 3+ months in ICUs; 3 intubations; 7 surgeries; 9 first holidays; countless IVs, transfusions, NG tubes, and chemo treatments later, Charlie was finally discharged in July 2024 and reunited with his twin brother at home. Today, Charlie is thriving! Though he continues to see a team of specialists including oncology, GI, pulmonology, physical therapy, and speech therapy (to name a few), we are incredibly grateful to be together as a family.
With such limited funding and awareness surrounding IM, research was crucial in finding a successful treatment plan for Charlie. With events like Miracles in Motion, we hope to raise more pediatric cancer research funds to support Charlie’s ongoing condition and help other families facing similar challenges.
