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Fact: The average life expectancy of a person with Down syndrome is nearly 60 years old. Some people with Down syndrome will live into their 80s. This is a huge increase from 1983, when the average life span of a person with Down syndrome was 25 years old.
Myths and misinformation were dispelled as one by one, community members stepped on stage at the Church of Eleven22 in Jacksonville on March 21 to present these facts about those living with Down syndrome during World Down Syndrome Day. The event not only dispelled common misconceptions but aimed at celebrating the often-misconstrued diagnosis of the third copy of the 21st chromosome. According to Michelle Tesori, co-founder of the Tesori Family Foundation, “Down Syndrome Day is a special day for us to formally celebrate what we have the pleasure of celebrating with our son every day — an extra chromosome!”
The second annual 321 Love Your Neighbor celebration included bouncy slides, activities and food trucks outside the Baymeadows location of the Church of Eleven22. The Tesori Family Foundation, a Ponte Vedra-based nonprofit organization devoted to helping families across Northeast Florida, hosted the event in addition to the church.
WJXT4 news anchor Nikki Kimbleton emceed the event, along with notable Downs syndrome speaker John Franklin "Frank" Stephens. Stephens is an advocate, actor, author and athlete with Down syndrome, who has spoken about the genetic disorder at Congress and has been invited to the White House — not once, but twice.
Stephens doesn’t only advocate for the rights of those with Down syndrome. He also presents his story as a mirror to children and parents of children with the condition to empower them to believe in a positive future. His success story of achievements reframes the dialogue about having a lifelong “disability” and what can be expected from someone with Down syndrome.
“When I come here, I know I advocate mostly to young parents and families,” Stephens said. “(I know) you're wondering what life with Down syndrome has in store for you. I can answer that for you. It will be full of the ordinary and extraordinary. It will be filled with laughter and tears, but most of all, it will be filled with love. I know this because it has been my experience.”
Although a Down syndrome diagnosis still carries a stigma, there have been many recent improvements toward lifting the quality of life of individuals diagnosed. Organizations such as the Down Syndrome Association of Jacksonville provide an array of services and job training initiatives to help those in the community achieve their potential. In anticipation of the Association’s 30th anniversary, it has grown from serving only a handful of families, to over 1,500 individuals and families with Down syndrome. The growth has resulted in the nonprofit’s recent relocation of its original Riverside office to Southside, where it can accommodate more onsite programming. This additional, new programming includes North Florida’s first employment training program tailored specifically to people with Down syndrome, who, according to a recent study from researchers at MassGeneral Hospital for Children (MGHfC) and colleagues in the Netherlands, never stop learning and acquiring functional skills throughout their lives.
During Stephens’ presentation at the 321 Love Your Neighbor event, he spoke about his October 2017 congressional testimony. In front of Congress, Stephens advocated for allotting federal money to research that would help people with Down syndrome, rather than focusing on addressing the condition with prenatal testing that could result in selective abortions. He addressed the chairman and members of the committee with the introductory statement, “Whatever you learn today, please remember this: I am a man with Down syndrome and my life is worth living.”
By looking at his history of accomplishments, it safe to say that Stephens has indeed had a full life at only 37. He has acted in the award-winning film, “Touched by Grace,” as well guest-starred in the Emmy-winning TV show, “Born this Way.” In addition, Stephens won the 2016 Quincy Jones Exceptional Award from the Global Down Syndrome Foundation for his work addressing discrimination against those with Down syndrome. He regularly lectures at universities around the U.S, promoting his message of inclusion and acceptance in a diverse world.
Stephens credits much of his success to his parents, John and Cornelia Stephens, and his brother, Nick, for supporting him. He urged the families at the 321 Love Your Neighbor celebration to do the same.
“Your kids are going to climb on your shoulders and do things we never even dreamed,” Stephens said. “This is what happens when you decide to follow joy not despair. Open you hearts to your children's joy. Oh, and when you run across an occasional nonbeliever, who looks at your child and frowns, or ones that say something like, ‘Bless your heart, that must be so hard,’ or the kid that says, ‘What’s wrong with your baby?’ Just tell them, ‘My little one has an extra chromosome — but don’t worry he is very accepting, he won't hold it against you that you're common.’”
