Gabe in the pool with his big brother, Ethan.
Hilary Tonni’s connection to Akron Children’s runs deep. Not only has she worked here for the last 16 years (currently as a clinical research nurse), it’s also the place she seeks care for her 8-year-old son, Gabe, who has Down syndrome.
Hilary’s journey with Gabe began with a 20-week ultrasound that hinted at the possibility of Down syndrome. Hillary met with staff in Akron Children’s Down Syndrome Program and they offered to connect her with other families of kids with Down syndrome, but she declined.
“I felt really alone, and I don’t think I would have felt that way if I’d taken them up on the offer,” she recalls. “Now I make it my mission to reach out to other families of kids with Down syndrome. I never want anyone to feel like I did.”
Gabe working on coloring and holding a writing utensil at school.
Gabe was born with additional health challenges including Hirschsprung disease, a birth defect where some nerve cells are missing in the large intestine. At 1-week-old, Gabe underwent surgery to remove a portion of his colon. Since then, Gabe has remained a patient with gastroenterology and surgery, but recently started the Bowel Management Program at Akron Children’s.
“He gets bad gut infections; his last one was this past January” says Hilary. “We have a daily routine, which includes medications and enemas to help keep his gut in balance.”
Gabe is also seen monthly in the Infusion Clinic where he receives infusions for iron deficiency anemia.
Now 8 years old and a first grader at Jackson Local Schools, Gabe loves school, sports, music and the outdoors. Despite facing challenges like anhidrosis, a medical condition that affects his ability to sweat, Gabe is starting track and field and swimming with the Special Olympics.
Gabe was born with Hirschsprung disease, a birth defect where some nerve cells are missing in the large intestine. At 1-week-old, Gabe underwent surgery to remove a portion of his colon.
For Hilary and her husband, Bill, the most rewarding aspect of parenting a child with Down syndrome is experiencing the unconditional love Gabe offers and witnessing the milestones he’s achieved.
“He can turn anyone’s day around with his infectious smile and laugh,” she says. “I know how hard he works in occupational, physical and speech therapies. He’s learning words, putting together puzzles and is recognizing some shapes and numbers.”
While parenting a child with Down syndrome can be challenging, Hilary says parenting her neurotypical 16-year-old son can also be challenging.
“There are a lot of stigmas out there for people with intellectual disabilities,” she says. “They are capable of so much with the right tools, resources and medical care. These kids can succeed in life. They can have a job and live independently.”
Hilary has found support through the Down Syndrome Program at Akron Children’s and also through Gigi’s Playhouse, a Down syndrome achievement center located in Canton that offers therapeutic based programs, tutoring and cooking and exercise classes.
Gabe listening and practicing mini javelin at track practice.
Connecting with these resources has helped Hilary advocate for Gabe at school.
“I learned about IEPs, what I should be asking, and linking his medical and social needs,” she says.
While there have been numerous providers who have helped Gabe, Dr. Reinaldo Garcia, pediatric gastroenterologist, Dr. Amy Senk, Gabe’s pediatrician at Akron Children’s Pediatrics North Canton and Dr. Ian Rossman, pediatric neurologist, have been mainstays.
“Gabe was getting a lot of debilitating migraines triggered by the heat. Dr. Rossman helped us come up with a protocol to recognize when he was suffering and how to help him,” Hilary says.
“Carolyn Davis, APRN, from surgery and the Bowel Management Program, has also been a huge lifeline for us since last January,” she adds.
When asked for advice for new parents facing a Down syndrome diagnosis, Hilary offers reassurance.
“Everything will be OK. Your kid will be amazing,” she says.
Akron Children’s recognizes the importance of inclusive care and strives to provide tailored support, resources and guidance to ensure that families like Hilary’s feel empowered and embraced throughout their journey.
Learn more about the Down Syndrome Program at Akron Children’s.
