Our family will be walking in the Races for Faces fundraiser on September 16th, to raise awareness for children with craniofacial abnormalities. Races for Faces is an annual fundraiser for MyFace.org. My Face is an amazing organization that funds medical, surgical, dental, speech evaluation/therapy, and psychosocial services. They also provide local housing for families during treatment, family support groups and much more. My niece Blair and son Rory were both born with craniofacial conditions.
Blair was diagnosed with soft cleft palate not long after birth. A soft cleft palate is when the roof of the baby's mouth doesn't develop normally during pregnancy, leaving an opening or cleft in the palate that may go through to the nasal cavity. This March marked 7 years since her surgery at NYU with Doctor Staffenberg. She was just 9 months old when her surgery was performed.
Rory was diagnosed at four months old with Metopic Craniosynostosis. Craniosynostosis is a condition in which one or more of the sutures in an infant's skull prematurely fuses by turning into bone before birth. The metopic suture runs from the front soft spot through the forehead to the top of the nose. If left untreated, craniosynostosis can cause increased pressure on the brain, potentially leading to brain damage, vision and hearing loss. This December will mark 2 years since Rory's CVR Surgery also performed by Doctor Staffenberg at NYU. We cannot thank Doctor Staffenberg and his staff enough for what they have done for our children.
We want to raise awareness and support this wonderful foundation that can help provide services for those who cannot afford the expense of a necessary and major surgery.