Adults with Down syndrome in Central Florida now have a one-stop shop for specialty treatment at AdventHealth.
The hospital network is expanding its services for children and adults with Down syndrome in Orlando by opening the Stella Tremonti Down Syndrome Clinic, or SMILE, for short.
The clinic is named after the 2-year-old daughter of one of the founding donors — the lead guitarist from the band Creed, Mark Tremonti.
"Stella is the face of the clinic. She's the smile of the clinic," he said standing with his wife Victoria, a founding donor, during a press conference Tuesday. "When we got the diagnosis that our daughter was going to be born with Down syndrome, we had a new purpose in life. We wanted to raise as much awareness and funds for families with folks with Down syndrome."
SMILE is the first-of-its-kind, lifespan Down syndrome program in the Southeast U.S. based out of the main AdventHealth Central Florida campus on Princeton Street. The clinic offers a wide range of specialties including physical, occupational, and speech therapies.
About 6,000 babies with Down syndrome are born every year in the United Statesmeaning that Down syndrome occurs in about one in every 700 babies, according to the Centers for Disease Control and Prevention.
While the need for pediatric specialty options is great, adults are in severe need as well. In the last 60 years, the life expectancy of a person with Down syndrome increased dramatically from 10 years to 60 years old, CDC research shows. While the population has grown, access to specialty care has not.
“That lack of access to specialty care is really limited," said Kandi Pickard, the president of the National Down Syndrome Society. "So opening a clinic that has the lifespan of an individual with Down syndrome tied into it is a critical need for (the Central Florida) community.”
There are only about 12 facilities in the U.S. that off adult care for people with Down syndrome, Pickard said.
The National Down Syndrome Society conducted a study surveying more than 300 adults with Down syndrome and their family members. Half of the respondents said they had trouble accessing medical providers experienced in caring for individuals with Down syndrome.
"It's sort of like the Wild West once a patient turns 18," said Dr. Asef Mahmud an adult primary care physician at SMILE. "Patients with all their childhood conditions, it's a shot in the dark. They don't have specialists that feel comfortable. They may not have a primary care physician that feels comfortable."
One of Mahmud's patients is 20-year-old Sean Sikora. His mother, Jenn, said they had previously received tremendous support when Sikora was a child, but she was concerned about transitioning to adult care. However, with SMILE, she's excited about the wide availability of treatment options.
"At 18 or 22 we say that you fall off the cliff," Jenn said. "Now we are going to have a home to come to where we can work with a provider who understands the issues that we face with having an extra chromosome but also working collaboratively with our specialty providers."
