More Alike Than Different: Celebrating Dylan’s Story

October is Down Syndrome Awareness Month, established in the 1980s to promote inclusion, education, and community integration.

Down syndrome is a genetic condition caused by an extra full or partial copy of chromosome 21, which affects development and physical features. It is named for English physician John Langdon Down, who first described it.

There are three types:

• Trisomy 21: three copies of chromosome 21; about 95% of cases.
• Mosaic: only some cells have an extra copy.
• Translocation: extra chromosome 21 material attaches to another chromosome.

Prenatal screening can indicate an increased chance of Down syndrome. Findings between 12 and 24 weeks such as a small or absent nasal bone, increased nuchal fold thickness, or enlarged ventricles may indicate a higher chance. While amniocentesis, performed between 15 and 20 weeks, can confirm a diagnosis.

Associated health concerns may include:

• Heart conditions, sometimes requiring surgery.
• Sleep apnea caused by airway differences.
• Digestive conditions, including reflux or celiac disease.
• Other concerns, such as thyroid, hearing, vision, dental, or neurological conditions.

Developmental milestones may occur later, but early intervention and occupational, physical, and speech therapy can support fulfilling lives.

I was 10 weeks pregnant with my second child when a doctor told me that my baby showed signs of having Down syndrome. My husband and I were terrified of the unknown. At 20 weeks, a fetal echocardiogram showed that our child’s heart was perfect. We knew our child was healthy, and that was what mattered. At 37 weeks, I noticed less movement and went to the doctor. An ultrasound showed limited movement and low amniotic fluid. Dylan was delivered within the hour by emergency C-section. He had experienced a stroke in utero and spent a month at the NICU. Thankfully, his body showed no effects from the stroke.

After Dylan was born, our family became connected to a strong network of Down syndrome support groups, advocacy organizations, and a welcoming community. Dylan received early intervention services from multiple therapists and continues to benefit from therapies and specialized support through his school, where he participates in both general education and special education classrooms. One organization that has had a significant impact on our lives is the Down Syndrome Association of Pittsburgh (DSAP), which provides programs, events, and adaptive fitness opportunities that support individuals with Down syndrome and their families.

One of these programs, Down to Box, provides specialized boxing instruction for individuals with Down syndrome and autism, helping participants build motor skills while supporting their physical, emotional, and social well-being. Through weekly sessions, participants develop friendships and connect with peers in an encouraging environment

I have been volunteering with the boxing program for nearly three years, and it has been an incredibly rewarding experience. I have developed friendships with incredible individuals who embrace themselves exactly as they are. When I shared that I have a son who has DS, they were excited to learn that he was like them. Their pride, confidence, and self-acceptance have taught me an important lesson: they celebrate who they are, and we should celebrate them, too.

Although Dylan is still too young for some adaptive sports programs, he excels at playing baseball through the Miracle League. They provide children and adults with disabilities the opportunity to experience the joy of playing baseball in an inclusive and supportive environment. Thanks to Pittsburgh Pirates Charities, adaptive baseball fields have been built to accommodate athletes of all abilities, ensuring that everyone has the chance to play.

Today, Dylan is a healthy, thriving child with countless qualities that make him extraordinary. He is so much more than a child with Down syndrome. He loves all the things many children love: watching cartoons, visiting the playground, blowing bubbles, playing soccer with his big brother, and going on hikes. He especially enjoys anything involving water, whether it’s swimming, boating, or throwing rocks into a creek to create the biggest splash possible. Dylan is also a world traveler who eagerly embraces new adventures. He has a curious and inquisitive mind, and we do our best to nurture his love of learning and exploration.

He is my best friend and, in many ways, an angel on Earth. Of course, he doesn’t always act like an angel because he is, after all, a child. He has his own opinions, moods, and mischievous moments, just like any other kid. That is one of the most important things I have learned on this journey: Dylan is far more alike than different. His diagnosis is only one small part of who he is. What defines him is his kindness, determination, joy, curiosity, and the love he brings to everyone who is fortunate enough to know him.

#NothingDownAboutIt

By Amanda Luffey