Tammy Gerenser is scrolling through photos of her 18-year-old daughter, Grace. She swipes through a series of images showing a beautiful young woman smiling, participating in school cheerleading, taking a surf lesson, and dressed up for homecoming.
When she first welcomed her daughter into the world, she said she was worried that Grace wouldn’t be able to have such experiences, because she was born with Down syndrome.
"Throughout the pregnancy, there was nothing showing as increased risks or increased markers," Gerenser recalled. "So when she was born, it was at that time that we found out that she had Down syndrome."
What did that diagnosis mean at that point?
"It was hard," she said. "At that point, I had been, like many people, exposed to all the negatives and the downside of individuals with Down syndrome. Knowing what I know now, I really wish I could go back and have this knowledge now, because she's a blessing and she's a joy, and I wouldn't change anything about her."
Approximately a quarter of a million people in the U.S. have Down syndrome.
October is National Down Syndrome Awareness Month.
"Down syndrome is a condition caused by having an extra 21st chromosome," explained Dr. Brian Chicoine, Medical Director of the Advocate Medical Group’s Adult Down Syndrome Center.
"People with Down syndrome have 47 chromosomes instead of the typical 46. It causes a variety of characteristics as well as health conditions."
While life expectancy for individuals with the disorder has doubled in the last 40 years, access to appropriate healthcare hasn’t kept pace, with only 5% of affected adults having access to specific specialist care.
"People with Down syndrome can live full and healthy lives, but they do need some support, like any of us," Chicoine explained. "For the first time, there's this large population of adults with Down syndrome who are living longer, and there's much more training about caring for children with Down syndrome in medical schools and residencies than there is for caring for adults."
"Families and people with Down syndrome do find it difficult to find a healthcare professional that can serve the needs of an adult with Down syndrome," he added.
To help close the critical knowledge gap, the National Down Syndrome Society is launching CARE Down Syndrome, an online, comprehensive free education and resource hub designed to equip primary care professionals with the knowledge, tools, and confidence they need to provide better care for adults with Down syndrome. The program and courses were developed in partnership with more than 40 national experts, including Chicoine.
For Tammy Gerenser, her daughter Grace reaching adulthood is an important milestone.
"This year and next year will be really exercises for me in stepping back and making her be more independent and do more things on her own," she said. "My hope is that she will not always live at home, as sad as that is for me, but for her, I want her to have that experience and hold a job. Life expectancy with individuals with Down syndrome has gotten significantly longer in the past several years. So I fully expect for her to have a long and healthy life, which is even more reason that medical care for individuals with Down syndrome is so important."
"I do honestly worry about it, since she's an only child, what will happen when my husband and I are gone. We both try to set her up to be as independent as possible so that it's not a devastating change for her. That's actually honestly my biggest fear and my biggest concern," she said.
Gerenser hopes that increasing visibility for Down syndrome and talking about Grace and individuals like her will lead to better care and understanding from others.
