Our family and friends will be participating in the Jimmy Fund 5k on September 22nd along the Boston Marathon course to raise money supporting pediatric cancer research.
Jeff's daughter Haley, was born in 2007 with a rare form of cancer called Dermatofibrosarcoma protuberans a soft tissue sarcoma. (DFSP is estimated to occur in 1 in 100,000 to 1-1 million people per year world wide)
At 2 months old physicians at Boston Children's Hospital discovered the tumor wrapped around Haleys brain stem preventing the cerebral spinal fluid to drain from her brain, causing a condition called hydrocephalus.
The tumor was also applying pressure to her brain stem causing many neurological issues.
Haley underwent three brain surgeries. At seven months a surgical resection was attempted to remove the tumor around her brain stem. The surgery lasted 9 hours and required 3 blood transfusions, the surgeon was only able to remove 40% of the tumor.
It was so entwined with the spinal cord they were unable to distinguish where the spinal cord began and the tumor ended.
In the words of Haleys neurologist, "Though her resection was complicated by significant hemorrhage and left her essentially a quadriplegic.. that she is walking is nothing short of a miracle."
She visits the Jimmy Fund every 6 months for her MRIs and the tumor remains stable. She still deals with some of her physical issues but never lets them slow her down.
We are grateful for the amazing doctors, nurses and staff at the Jimmy Fund and Boston Children's Hospital.
Haley is a happy, little girl, who loves, painting, photography, playing Minecraft, acting, and singing in her theater group, Break A Leg Theater Works.
Her strength and courage is an inspiration to us everyday.
Please forward and join team Halo Sienna as well as share this to any and everyone you can. We’re hoping raise even more awareness for the Jimmy Fund and Boston Children’s Hospital.