On October 17, AdventHealth for Children opened the SMILE with Stella Tremonti Down Syndrome Clinic, the medical home for the health system’s new lifespan program caring for children and adults with Down syndrome.
The first lifespan Down syndrome program in the southeastern United States, this program fills a crucial gap for some of the estimated 200,000 people in the U.S. with Down syndrome and will allow more children, adults and families to access comprehensive, world-class medical care.
“For a child with Down syndrome, early access to quality medical care has the power to change the trajectory of their life,” Rajan Wadhawan, senior executive officer of AdventHealth for Children, said. “By establishing this much-needed program, our clinicians and caregivers have the opportunity to make it easy for parents and families to tap into the medical care they need and deserve and make lifelong impacts in the lives of children.”
Based at AdventHealth’s flagship campus in Orlando, the clinic will be led by board-certified physicians specialized in providing whole-person primary care for individuals with Down syndrome and coordinating appointments and treatment plans within the health system’s expansive network of pediatric and adult specialists.
The Need for Adult Care
Access to adult care has never been more important for the Down syndrome community, as medical advancements have dramatically increased the life expectancy of individuals with Down syndrome, from just 10 years old in 1960 to 60 years old today. It’s a testament to the advancements in medical care, and also underscores the growing need for clinicians skilled in caring for adults in the Down syndrome community.
In a recent nationwide survey commissioned by the National Down Syndrome Society (NDSS) of more than 300 adults with Down syndrome and their family members, half of respondents said they had trouble getting access to medical providers experienced in caring for individuals with Down syndrome. A third said they received inadequate guidance on transitioning out of pediatric care because of a lack of adult care providers.
“There is a tremendous need for medical providers who can take care of adults with Down syndrome. In some areas, those medical providers are nonexistent,” Asef Mahmud, lead physician for the program’s adult care, said. “Now, patients and families can take comfort in knowing there’s a comprehensive medical program to care for them their whole lives, from diagnosis through childhood and adulthood.”
Making a Difference for Children and Families
Roughly 5,100 children are born with Down syndrome in the U.S. every year, making Down syndrome the most common chromosomal condition.
Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21, which alters the course of development and causes the physical characteristics associated with Down syndrome. The condition also puts individuals at higher risk of developing other health complications such as heart defects, leukemia, thyroid and musculoskeletal conditions, gastrointestinal problems, dementia, and hearing and vision loss.
“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,” Stacy McConkey, medical director over pediatrics at the clinic, said. “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.”
Together with the National Down Syndrome Society (NDSS), the Down Syndrome Association of Central Florida and founding donors Mark and Victoria Tremonti, AdventHealth for Children created this nationally leading, comprehensive program.
“This partnership with AdventHealth for Children will expand care for adults with Down syndrome throughout Florida and the United States and establish a model of world-class care with the potential to be replicated by other clinics across the country,” NDSS president Kandi Pickard said. “Establishing this program continues our efforts to address the shortage of specialized care providers for adults with Down syndrome, one of the key challenges facing this community.”
Through their charitable organization Take a Chance for Charity, Mark Tremonti, guitarist for the bands Creed, Alter Bridge, and Tremonti, and his wife, Victoria, established the Stella Tremonti clinic, recognizing AdventHealth for Children as a nationally ranked children’s hospital that sets the standard for innovation, quality, and comprehensive care. The clinic is named after their daughter who has Down syndrome.
“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,” Mark Tremonti said. “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.”