Each year, this newspaper features a photo of Nicolle Santos, 8, of Kearny, when her enthusiastic photo is beamed onto a large screen, at Times Square, Manhattan, for Down Syndrome Awareness Month.
Nicolle, a student at Franklin School, brings joy to every single person who has ever met her.
Her love, unconditional. Her spirit, undeterred.
To say she’s is an exceptional human being is an understatement. And she has Down Syndrome.
She is one of approximately 6,000 children who are born each year with Down (which equates to 1 in every 700 children born.)
Here are some other statistics about the syndrome, according to the Centers for Disease Control and Prevention:
• As a mom’s age increases, so, too, does the likelihood of bearing a child who has Down Syndrome.
• Research estimates there are about 83,000 teens or younger with Down Syndrome.
• Overall, there are about 251,000 Americans who have Down Syndrome.
• Going back to 1960, the life expectancy of someone who had Down Syndrome was about 10 years. Now, that life expectancy is 47, a staggering increase.
• Children with Down Syndrome are more likely than children without it to experience hearing loss, sleep apnea, ear infections, eye diseases, heart defects, intestinal blockage, hip dislocation, thyroid disease, anemia, iron deficiency, Leukemia and excessive constipation.
• Staggeringly, health care costs for children up to age 4 is estimated to be 12 times more expensive than for those without Down Syndrome.
• Nearly 40% of families with a child with Down Syndrome have at least one parent who leaves full-time work to become a full-time caregiver.
• Nearly 40% of all families with a Down Syndrome child report having serious financial challenges caused by their child’s condition.
Some of these statistics are mind-blowing. But ask the average person and they might not know any of them. We bring you this information as a reminder and to offer greater awareness to Down Syndrome.
But we do so, also, with the hope that in time, things will improve. We only need to look to our Nicolle to see just how vital that notion is.
Last, but certainly not least, we take this opportunity to honor and give thanks to Pathways to Independence, of Kearny, for its tireless work for and with many who have Down Syndrome.
That work does not go unnoticed and is priceless.
Learn more about the writer ...
Kevin A. Canessa Jr. is the editor of and broadcaster at The Observer, an organization he has served since 2006. He is responsible for the editorial content of the newspaper and website, the production of the e-Newspaper, writing several stories per week (including the weekly editorial), conducting live broadcasts on social media channels such as YouTube, Facebook, and X, including a weekly recap of the news — and much more behind the scenes. Between 2006 and 2008, he introduced the newspaper to its first-ever blog — which included podcasts, audio and video. Originally from Jersey City, Kevin lived in Kearny until 2004, lived in Port St. Lucie. Florida, for four years until February 2016 and in March of that year, he moved back to Kearny to return to The Observer full time. Click Here to send Kevin an email.