St. Baldrick's Foundation/LinkedIn
May 30, 2025, 19:22
William’s Journey with NF1 Highlights the Urgent Need for Pediatric Cancer Research – St. Baldrick’s Foundation
St. Baldrick’s Foundation shared a post on LinkedIn:
“At just 3 years old, William was diagnosed with neurofibromatosis type 1 (NF1), a genetic disorder that can cause tumors to grow on nerves throughout the body. At the time, he showed no symptoms – just required regular monitoring.
Six years later, William began experiencing persistent pain in his left leg. After several inconclusive scans, an MRI of his spine revealed a neurofibroma – a non-cancerous tumor – entwined with nerves in his lower left spine. Because of its location, surgery wasn’t possible.
In 2019, William began chemotherapy, a targeted daily oral treatment called Trametinib. The tumor remained stable for a while, and his pain decreased. Despite long-term side effects, including back issues, William remained active and resilient.
Recently, his family shared that he had to stop treatment due to severe side effects. Unfortunately, the tumor is growing again. With no open clinical trials currently available, they are now exploring alternative therapies under the guidance of a functional medicine doctor.
William’s story is a powerful reminder of why continued investment in pediatric cancer research is critical. His family remains hopeful – and so do we.
Join us in supporting children like William and fund lifesaving research today.”
Join.
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