Help Zachariah Access Life-Changing Treatment

This Go-fund me is for Zachariah, started by the extended family of Zachariah. Zachariah was born with a very rare disorder, called Congenital infiltrating lipomatosis of the face, in which lipocytes invade the soft tissues and muscles of the face, causing the affected side to grow larger than the other. It occurs sporadically in early development and is associated with somatic mutations of PIK3CA genes. The impact of this condition also causes overgrowth of the facial bones, early tooth eruption, macroglossia (enlarged tongue), and a trouble closing the eye on the affected side. Early on in Zachariah's life, he went through multiple surgeries to de-bulk the overgrowth, remove thickness of facial bones, and transplanted a part of his thigh muscle to raise his lips to create a more symmetric mouth. The bulk of the overgrowth remains.

In recent years, there have been medical breakthroughs with this very rare condition and new treatments are being offered. Our family has recently met with the cranio-facial surgery team at Erlanger Hospital in Chattanooga, TN and was educated on the newest treatments for Zachariah's condition. Zachariah is scheduled to have a biopsy of the overgrowth to send for extensive genetic testing. Once a the specific genes are identified, there is now medication for Zachariah that could target these genes on the overgrowth and shrink the mass. The surgery team informed us after shrinking the mass, a safe surgery could be performed to reduce the bulk and improve symmetry and function. We were informed insurance would not cover the genetic testing and total cost would depend on how many rounds of tests are needed to identify the specific gene. The biopsy and anesthesia will be partially covered by insurance. Your help will cover the medical costs of procedures, bloodwork, testing, and medications not covered by insurance and give Zachariah a chance at effective treatment.

Zachariah is scheduled for the biopsy in October 2024 and will have upcoming specialist appointments for medication. Once genetic testing results come back (up to 6 months we are told), then further medication will be started. Once the medication shrinks the mass, a larger surgery can be scheduled.