Our daughter, Lucy Alice Montenary, was diagnosed with Trisomy 18 and congenital heart disease prenatally in 2016. Trisomy 18 is a rare chromosomal condition and is usually fatal. Postnatally, 60% of children die within 2 months and more than 95% within a year. I am honored to say that Lucy turned 7-years old last September, she is the mere 5% that beat the odds of survival. I can say with certainty that 5% was due to the medical, physical and social support Lucy received from Children’s Hospital of Pittsburgh and The Children’s Home and Lemieux Family Center during her life.
December 20th, 2016 was Lucy’s first day at the Children’s Home and our family’s first experience being there. She was only 28 days old. I refer to the Children’s Home as our “Second Home” because that is exactly how the staff and the environment feels there. They have been our safe haven, our indispensable peace of mind and we offer our endless gratitude to them.
Lucy is the youngest of 4 sisters. Everyone that meets her gloats how much of a pleasure it is to care for her. She is extremely charming and strong willed, has a contagious smile, very lovable and admires unicorns and all things magical. She has an immense personality that shines so brightly, she is truly an extraordinary and remarkable person. 
The Children’s Home impacted my life in many positive ways. The staff continues to bring empathy, acceptance and inclusion to our family’s lives. Lucy’s sisters have been included in their sister’s care since day one, they were also able to interact and play not only in her room but outside of her room with Lucy. There seemed to be no limitation of what Lucy could do. We had access to the outdoor playground and they had opportunities to engage in plenty of meaningful experiences. Lucy’s sisters gained an increased capacity for empathy and a greater tolerance for individual differences at such a young age. The children’s home created a safe environment for siblings of children with medical needs and a place to call their own. I recall a significant memory, I had to perform my first emergency trach change on Lucy, I was worried how I was going to manage my other three daughters, all under the age of 10 years old. The staff had visitors that dressed as princesses that day and they played with my daughters while I did something so frightening. 
I remember feeling focused and relaxed, because I knew they were happy, safe and entertained. The nurses taught me an abundance of knowledge pertaining to nursing, which helped me gain the confidence to understand my capability, and think critically for Lucy’s medical needs. The staff improved Lucy’s wellbeing and she thrived tremendously over the years physically, socially and emotionally. I will always have immense appreciation for the Children’s Home for their patience, understanding and dedication to our family for the trust, bond and memories we have made together.
