Gino Russ is a curious, outgoing little boy who just started preschool. He loves to run, wrestle and play with his big sister. He’s a typical 3-year-old boy but, sometimes, people don’t always see him that way.
“I think what I’d like people to know about Gino is that while he has Down syndrome, he’s really not so different,” said Brent Russ, Gino’s dad. “Sure he may do some things at his own pace, but that’s normal for any child. I’d much rather people ask me about Gino than just stare at him or not include him because they don’t think he can do something.”
World Down Syndrome Day, March 21, is a day meant to support families like Gino’s by raising awareness and knowledge about Down syndrome (DS) and the vital role people with DS play in the community.
In the United States, about 6,000 babies or 1 in every 700, are born with DS every year. The effects of DS vary from one person to another, but it can cause mild to moderate learning impairment, certain physical characteristics and some health issues, including heart, thyroid, hearing and vision problems.
“I just don’t think enough people know that much about DS. They think there is only one type or that everyone has the same traits, which isn’t the case at all,” said Tiffany Russ, Gino’s mom. “Gino is smart, capable and full of energy so when someone thinks it’s a disservice to have their child play with mine it’s really unfortunate because they both can learn a lot from each other. Inclusion really does make us better….”
Experts agree that access to healthcare, early intervention and inclusive education are important to the growth and development of a person with DS.
“Akron Children’s has been great from the start,” said Tiffany. “After a healthy pregnancy and delivery we were told about 10 hours after birth of Gino’s suspected diagnosis. Four days later, our pediatrician sent us to the NICU due to jaundice. While there, his bloodwork came back to confirm Gino had DS. Cindy from the (Down syndrome) clinic visited us during our stay in the NICU to share information with us about all the resources and specialists who could help Gino and our family.”
In support, Gino’s parents began working with him as an infant at home and with help from Akron Children’s occupational, physical and speech therapists.
“We knew speech was going to be a challenge for him so over the past few years he’s learned more than 60 sign language signs,” said Brent. “He’s even taught other family members and teachers how to sign which helps us all communicate better and minimize frustration.”
One of Gino’s big milestones came over a year and a half ago when he started walking.
“We all really worked hard with him to keep him on track and he did it…now it’s hard to keep him from running,” jokes Tiffany.
Down Syndrome Program
Akron Children’s Down Syndrome Program is designed to help families and patients make connections with other families, manage medical issues and maximize their child’s development.
“We start talking with families right away and then start seeing the kids around 3 months old through adolescence,” said Cindy King, LISW, coordinator of the Down Syndrome Clinic at Akron Children’s Hospital. “We work with pediatricians and specialists to help kids achieve milestones but, one of the most important things we do, is teach families how to advocate for their child – getting the right therapies, understanding insurance documents, getting support from the school – there’s a lot to navigate through to help each child thrive.”
As the only team-based DS clinic in Northern Ohio, families can receive customized services to fit their child’s specific needs in just one visit, including developmental and behavioral pediatrics, physical, occupational and speech therapy, audiology and nutritional services.
Diane Langkamp, MD, MPH, director of the Down Syndrome Program at Akron Children’s Hospital, sees first-hand the positive difference programs like the one at Children’s is making.
“Children with DS today are doing better than those in previous generations due to better healthcare, early intervention and educational services, as well as inclusion in social and community activities with their families and peers,” said Dr. Langkamp. “Today our kids are playing soccer, taking swimming lessons and participating in dance and music with their peers, which wasn’t always the case even just 10 years ago.”
For WDSD, or any day of the year, Cindy King knows exactly what her patients bring to the community.
“Humor and happiness. They are some of the friendliest kids you’ll ever meet,” said King. “They accept you for who you are…I think we could all learn something from their example.”
The Russ family agrees.
“I hope through inclusion and awareness about DS others will see the similarities we share rather than the differences,” said Tiffany. “For Gino, he brings energy and a contagious smile to any room he walks in…He really is the life of the party.”