Charlie Pankake

Charlie Pankake, 7, Down syndrome

How would you explain Down syndrome to a child?

Everyone’s body is made up of cells that contain chromosomes. Most people have 46 chromosomes, but people with Down syndrome have an extra one, which makes 47. They have three copies of number 21, instead of the usual two. This 3rd copy means they have Down syndrome. People with Down syndrome may need extra time and help to learn how to do things such as walk, speak, learn, and play. They often have similar physical features, which means you may be able to tell that someone has Down syndrome just by looking at them.

What would you want the world to know about Down syndrome?

I would like the world to know that all people with Down syndrome are unique, just like the rest of us. While there are commonalities between people with Down syndrome, they do not apply equally to each individual. People with Down syndrome have the potential to learn to do many of the same things as everyone else when given time, patience, and maybe some creativity! They also have a wide range of emotions, despite the reputation of always being happy. I also want people to know that it is okay to be curious about Charlie. I know that many adults and children have never met anyone with Down syndrome and are unsure of what to say or do, and how to say or do it. I encourage people to interact with Charlie, ask questions, and learn more about him, rather than make assumptions based on him having Down syndrome.

What does it feel like to live with Down syndrome?

Living with Down syndrome has meant a few surgeries, many medical appointments, lots of therapies, and some necessary equipment, such as braces for his feet and an augmentative and alternative communication (AAC) device to help him communicate. Charlie experiences joy, pride, disappointment, frustration, excitement, and all sorts of feelings! Living with Down syndrome has also meant many typical experiences like playing t-ball, going to the park, driving his ride-on vehicle, going to school, jumping on trampolines, and enjoying waterslides!

What brings you joy?

Making people laugh, showing mom his art projects, dancing with his big sister, running around with dad, anything with letters and numbers, watching Peppa Pig, playing outside, and eating pretzels all bring Charlie great joy! Charlie also brings joy to so many people. People admire him for his hard work and determination, and he has an amazing ability to show his love. As parents, we can’t help but smile when we see the joy on kids’ and adults’ faces when they interact with Charlie. We truly feel lucky to have him!