The Caterina Grace Foundation was founded in memory and honor of Caterina Grace by her loving parents Anthony and Leah Ziniti. Caterina Grace was born on November 15th 2016 after complications developed in Leah's pregnancy. Caterina was born unable to breathe or swallow on her own due to muscle weakness. Caterina spent 5 weeks in the Neonatal ICU at Cohen Children's Medical Center in New Hyde Park, NY undergoing an array of tests - all of which came back negative. Mary's Children's Hospital in Bayside, Queens where she spent 7 weeks undergoing intensive feeding, occupational, and physical therapies while still receiving nursing and respiratory care. Caterina fell sick with several respiratory infections and was then transferred back to the Pediatric ICU at Cohen's Medical Center requiring intubation and more testing ensued. Sadly, Caterina passed away on February 27th 2016 after 104 days on earth. Her devoted parents, Leah and Anthony never left her side and endlessly searched for answers to improve the welfare of their beautiful daughter. After submitting blood work for Whole Exome Sequencing, it was discovered that Caterina's DNA had a mutation on the ACTA1 gene. This gene is linked to rare congenital myopathies - specifically Nemaline Myopathy. With this information, the Ziniti family seeks to raise awareness and funding in order to ultimately cure this rare disease.
