By Mark Ambrogi
Jill Salas’ daughter was born with a rare medical condition called PHACE Syndrome.
“Shortly after birth, a large discolored area of her face which we had been previously told was a bruise from birth trauma began to change from purple to fire red and then began to swell dramatically over the next year of her life,” said Salas, a Noblesville resident who co-founded the PHACE Syndrome Community nonprofit in 2013.
PHACE stands for P: posterior fossa malformation (defects of the structure of the brain), H: hemangioma, A: arterial anomalies, C: cardiac anomalies, E: eye anomalies. It is believed that PHACE occurs in 1 in 10,000 births, Salas said.
“As we received more information, we found that she had the H, A and C of the syndrome called PHACE,” she said.
PHACE Syndrome Awareness week began March 20 and ends March 27.
“The first four years of my daughter’s life was filled with non-stop doctor and therapy appointments,” said Salas, whose daughter Guinevere is now 11 years old. “Going out in public was always an adventure as her face was filled with red and purple lumps and bumps. The hemangiomas had taken a toll on her. They had begun to rip apart her upper lip and the soft tissue of her nose, leaving her with scars. Everywhere we went, people would stare and many would have comments or remarks but, believe it or not, most were comments of support or concern with only an occasional rude jab.”
The nonprofit will hold a PHACE family conference in June.
For more, visit phacesyndromecommunity.org. Donations can be made through the website as well.
“We are the only organization helping PHACE families in the U.S. and internationally by providing support through our online community, and we are the only patient advocacy organization pushing forward research initiatives for PHACE Syndrome,” Salas said.
