Benji C. is a strong, confident, self-assured, loud, and determined 8-year-old with MPS I.
When Benji was a baby, his parents had some unique concerns about his health and brought them to their doctor. The doctor told them that what Benji was experiencing was normal for boys his age, and not to be concerned because all kids develop differently. Then, at 15 months old, someone suggested to Benji’s parents that his coarse facial features might be an indicator of a genetic disease.
After an expedited trip to a geneticist, Benji was diagnosed with Hurler Syndrome at 16 months of age. He immediately started Enzyme Replacement Therapy (ERT), and at 18 months old he underwent a Bone Marrow Transplant with cord blood.
Benji’s transplant recovery was a long one. He dealt with complications such as a Graft-versus-host disease (GHVD) skin infection and auto immune hemolytic anemia. Benji’s family did not realize how long of a journey they would have post-transplant, but they learned to celebrate all the little wins along the way. Still, it took Benji two to three years longer to do things that other children his age might, like learning to talk and getting potty trained.
“I would never have expected us to be in as great of a place as we are,” said Benji’s mother, Tamara. “Despite his surgeries for carpel tunnel, umbilical hernia, hip realignment, and guided growth of his knees, he is one of the most positive, grateful children I know. He loves life, singing, and school, and while this isn’t a journey we would have wanted to be on, we would not change our son in any way.”
