In recent months, the media has been full of coverage about how the healthcare system fails individuals with disabilities. For example, an April 2023 article in Disability Scoop cites changes in training requirements for pediatricians that many fear will leave them poorly equipped to treat young patients with developmental disabilities. Likewise, a piece in New Mobility asserts that “not only are most doctors undereducated about patients’ disabilities, but they also know little about the Americans with Disabilities Act and how to accommodate patients with disabilities.”
Meanwhile, an Oct. 2022 article in the New York Times headlined “These Doctors Admit They Don’t Want Patients with Disabilities,” reveals shocking details about the ways in which doctors avoid treating patients with disabilities.
In light of all this, we were pleased to see a recent press release about the Orlando, Florida-based SMILE with Stella Tremonti Down Syndrome Clinic, aka SMILE, a brand new health center that’s part of AdventHealth for Children.
SMILE, which opened on Oct. 17, provides interdisciplinary treatment for individuals with Down syndrome from birth through adulthood. The clinic is named for 2-year-old Stella Tremonti, daughter of Mark Tremonti, former guitar player for the Grammy Award-winning band Creed, and his wife Victoria, who are founding donors for the project. Additional partners for SMILE include the National Down Syndrome Society and the Down Syndrome Association of Central Florida. It is the first such facility in the Southeast and one of 11 across the U.S. that specialize in holistic treatment for people with Down syndrome.
Every year, approximately 5,100 children in the United States are born with Down syndrome and about 200,000 people in the U.S. currently live with the chromosomal condition. Thanks to scientific advances, lifespans of individuals with Down syndrome have risen dramatically in the last six-plus decades. In 1960, the average person with Down syndrome lived to be only 10 years old. Today, the average lifespan of a person with Down is 60 years of age. While this is a wonderful development, it also means that many more individuals with Down syndrome will, as they age, experience a variety of medical conditions that are more common to people with Down syndrome. These conditions include heart defects, hearing and vision problems, leukemia, gastrointestinal ailments and dental problems. Unfortunately, identifying primary care doctors and specialists willing and able to treat individuals with Down syndrome can be extremely challenging, especially once patients reach adulthood.
In a press statement, Dr. Stacy McConkey, medical director of pediatrics at the
SMILE clinic, explained that “navigating life with a child who has Down syndrome can be overwhelming for parents to do on their own. Individuals with Down syndrome require yearly screenings and testing, bi-annual appointments with cardiologists, orthopedists and other specialists, regular check-ups to monitor hearing and vision, as well as speech, occupational and physical therapies. To be that central provider holding families’ hands along the way and making sure all of the specialists are on the same page, it’s incredible to see how our health care professionals come together to make a difference in a child’s future.”
Mark Tremonti said “After we found out our daughter would be born with Down syndrome, like most parents I was afraid, I didn’t know what to expect. But it immediately became my family’s mission to raise awareness and support for the Down syndrome community,” said Mark Tremonti. “My dream for this clinic is for people to come from around the country or even from around the world because it’s the best and most comprehensive place for individuals with Down syndrome.”
For more information about the SMILE program, visit adventhealth.com/hospital/adventhealth-children/down-syndrome-program.
