Today I got an email from Dr. Joanne Kurtzberg, a physician at Duke University who also specializes in treating kids with Hurler's. This is one really encouraging paragraph from the message:
"We have transplanted >50 young children with MPS I and >160 children with metabolic diseases at Duke. Approximately 85% of children engraft and survive the transplant procedure. These children have normal cognitive development. Their vision is generally preserved and their hearts function normally. Children have a varying degree of orthopedic problems as they get older with some (approximately 50%) needing back or hip or knee or carpal tunnel surgery as they get older. With aggressive therapies and care, these children experience a very high quality of life. We expect their lifespan to be normal, but really don't know as children did not survive MPS before transplantation therapy."
According to Dr. Kurtzberg, there is a high probability that Gracie can have a long and happy life.
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