On August 13th, 2017, the Caterina Grace Foundation presented a $27,000 check to Northwell Health Cohen Children’s Medical Center. $20,000 would be distributed to the Genetics Program led by Dr. Kenan O’Nell and $7,000 to the Chaplaincy Program. While Caterina was alive, Mom and Dad worked with Dr. Hyman and Dr. Bialer within the Genetics Department to try to obtain answers regarding Caterina’s illness. It was through extensive genetic testing – the “WES” or Whole Exome Sequencing, we would be able to identify a de novo gene mutation that caused Caterina’s horrible disease. This test is so extensive it took close to three months to obtain results. One of the main reasons we decided to contribute to the genetics department is because we truly believe that in furthering the identification and understanding of gene mutations, hospitals can better improve how they treat their patients with regards to all types of disease. Specifically, one of the major projects the Genetics Department at Northwell is working on is to understand rare cancers in young adolescents. Studies have shown that rare cancers have been linked to specific gene mutations and by knowing what these mutations are, patients are able to receive specialized treatment more rapidly, thus improving their survival rate. Cancer is a disease that unfortunately affects many families and the more we understand cancer causing genes the more equipped we are to both prevent and treat cancer in our loved ones.
The $7,000 we provided to the Chaplaincy Department was largely in part to the spiritual guidance we received from a very special man named Adrian Mazur. We met Adrian on day three of Caterina’s life. Anthony’s father, Steve, had arranged an anointing of the sick sacrament and Adrian stopped by to talk to us about it. He gave us a beautiful pink rosary to hang in Caterina’s incubator along with a picture of Mary and Jesus to hang there as well. There was something about the way he spoke that was so comforting to us and I remember on this day I was crying and thanking him for his support. He told me, “Mom, don’t cry, because the name Caterina is derived from the name Catherine and St. Catherine’s Monastery is the oldest monastery in the world and the one where the most miracles have occurred.” This encounter has stuck with me and although the miracle would not be Caterina’s healing on earth, but in heaven, we are left with the miracle that people can comfort us during the absolute worst time in our lives. Adrian went on to support us throughout Caterina’s life visiting us daily in the Neonatal ICU, saying prayers with us and her. He even visited us at St. Mary’s on one of Caterina’s first nights there. A welcoming face we saw in the door way of her room right before we had to kiss our girl goodnight. He also stayed by our sides throughout her Pediatric ICU stay and was in the room with us when she passed and went to Heaven. We are so thankful for his support and he will always hold a special place in our hearts.