Faces of Long Island celebrates the uniqueness of everyday Long Islanders. In their own words, they tell us about their life experiences, challenges and triumphs. Newsday launched this social media journey into the human experience to shine a light on the diverse people of this wonderful place we call home.

Category: lake-grove

‘Noah taught me how to be brave and strong, even through the most terrifying times of our lives.’

Ashley Sagistano, Lake Grove

“Our son, Noah, was the most amazing baby boy. He was so strong and resilient and lit up a room with his big bright eyes and beautiful shining smile. Noah was born on February 2, 2022. Noah was diagnosed with pulmonary stenosis, double outlet right ventricle and ventricular septal defect. At 11 days old, he underwent open heart surgery and received a post Blalock-Taussig shunt. The following day, he went in for his first of several heart catheterizations, where he received stents and ballooning.

“After six long weeks in the hospital, this little warrior finally came home to meet his big sister, Emma. At about 6 months old, he went in for his pre-surgical heart cath, followed by his second open-heart surgery. Noah was tube-fed for the first nine months of his life and diagnosed with failure to thrive. It was a constant battle to feed him. After working with a consultant, we successfully weaned him off the feeding tube in 10 days. He went from drinking nothing to 20 ounces a day by bottle. He received feeding therapy and nutrition support regularly. Soon he was eating his favorite Domino’s pizza!

“Unfortunately, in October, the findings from a CT scan showed this surgery did not do what it was intended to do. His pulmonary artery did not grow. Noah went in for his third cardiac catheterization. They were supposed to intervene with stents and balloons; however, this procedure was unsuccessful. “He had bleeding in his lungs, which halted the procedure. He spent a week recovering from this procedure. Because this procedure was unsuccessful, Noah needed an extremely invasive and extensive surgery, which had to be at Stanford children’s hospital in California. This surgery is called pulmonary artery rconstruction. Noah finally received his 15-hour surgery in July. Unfortunately, due to complications post-surgery, Noah passed away. He was only 17 months old, but he made such an impact on everyone he met and others he didn’t meet. He was an Earth angel.”

I believe [Noah] was put on this Earth to make people around him smile, be happy and teach us all how precious life really is.

“I believe Noah’s life and his challenges helped to teach us about the strength of the human spirit and resilience. Strangers followed Noah’s journey and were crushed to hear of his passing. He impacted those he knew. In his death, Noah has reminded us to slow down, stay mindful, enjoy every day, take nothing for granted, be kinder, be more patient, invest in relationships and laugh more.

“Noah changed me. Noah taught me how to be brave and strong, even through the most terrifying times of our lives. I believe he was put on this Earth to make people around him smile, be happy and teach us all how precious life really is. Although his time with us was too short, his legacy will live on forever. As his big sister, Emma, said, ‘Mommy, Noah is so proud of you.’ I hope we continue to make Noah proud and advocate for babies like him. We’ll love him always and forever.”

Interviewed by Starr Fuentes

‘I believe people with Down syndrome can do anything—really, really anything!’

Lake Grove

“I saw a video in 2014 about people helping to welcome babies with Down syndrome. I was shocked. The video says, ‘Welcome to the family. Welcome to the world.’ That’s when I realized that most parents of newborns with Down syndrome only hear, ‘I’m sorry.’ Sometimes they’re told, ‘Don’t take the baby home.’

“I told my parents my heart wanted to help so badly to tell parents it’s going to be okay, to celebrate this baby because it’s a baby. I wanted to make baskets to welcome them. We made Brittany’s Baskets of Hope with a website and social media. We hooked up with Down syndrome associations on their list of resources.

“In 2016, I delivered my first basket. Parents of little boys and girls with Down syndrome get a basket with sunglasses, bottles, pacifiers, toys, books, a Down Right Perfect onesie and resources. Some people donate knitted booties, hats and crocheted blankets. We’ve sent out 1,415 baskets. The entire world gets the baskets from us.

I’m a role model so that they know that life is going to be okay and their baby’s going to live a great life.

“When we have a local baby, we ask if we could deliver it in person and that’s the best part. I say, ‘Welcome to the family. Welcome to the world.’ I know the moms are worried about whether their babies are going to be healthy, if they’re going to be accepted and if people are going to make fun of them. I tell them, ‘You can do whatever you want.’ I’m a role model so that they know that life is going to be okay and their baby’s going to live a great life. I always say I believe people with Down syndrome can do anything — really, really anything! I’m 32. I live my life the way I want. I have a good life. I love to sing and dance. I do carpool karaoke with my staff through an adult program called Self Direction who help me. I go to beaches, movies, out to dinner and vineyards. I work at Party City.

“We want moms of new babies to know that it’s going to be okay. I was the L’Oréal Paris 2019 Women of Worth national honoree. I walked the red carpet and met celebrities. I was invited to LA to do a video and ads for their 2020 campaign. My favorite part of doing this work is when I get to hold the babies. Down syndrome is not the only part of me. I want the message not to be ‘I’m sorry,’ but ‘Congratulations. We so welcome this baby.’”

Copyright ©2021 Newsday. All rights reserved.

Faces of Long Island is produced by Newsday Consumer Marketing. This content does not involve the reporting and editing staff of Newsday’s Editorial Department.