The Most Incredible Journey
When Jessica Capitani, 47, of Hershey, Pennsylvania says she’s done it all, believe her.
She’s travelled to six continents. Climbed to the peak of Mount Kilimanjaro in Africa. Trekked through the Himalayas. Hiked to the base camp at Mount Everest in Nepal (as a single woman, with a guide hired off the internet). She got engaged on the Great Wall of China, and bungee jumped off a bridge in New Zealand. On her honeymoon. Talk about taking a plunge!
But nothing prepared her for becoming the mother to a son with Down syndrome and numerous health conditions. She smiles and explains, “My son, Caden (age 10), has become my greatest adventure.” She and her husband, Frank, named him Caden because it means, “fighting spirit” in Gaelic.
In his first few years, Caden had many illnesses and battles to fight. Jessica credits the Penn State Hershey Children’s Hospital, part of The Children’s Miracle Network, with their help and support since his birth. “They are part of our extended family, part of the village that raised him,” Jessica says.
Now, in fifth grade, Caden’s health is much improved. He has speech apraxia, and is proficient in American Sign Language, thanks to an early interventionist who introduced them to ASL. Jessica explains, “Caden has some trouble with his speech, so signing is really special for him. It’s like we have our own secret language. He loves that!”
Now most of his battles, thankfully, are in the video game arena. Jessica laughs, “I can’t even keep up with him. He’s so good at them. He thinks I mess them up. He waits to play them until his dad gets home.”
The Love of a Lifetime
“My greatest challenge was to learn how to be the kind of mother Caden needed me to be.” That meant learning everything she could about Down syndrome and the other medical conditions he has including gastroesophageal reflux disease, hypothyroidism, laryngomalacia and tracheomalacia.
This was a huge reversal from the life she and Frank had known. Mountain biking trips and adding stickers to their passports were replaced with meeting doctors, therapists and early intervention specialists. And while they no longer keep in as close contact with some of their thrill-seeking friends, Jessica and Frank wouldn’t have it any other way.
Caden is the love, joy and light of their lives. He’s affectionate and energetic. He loves learning about anything and everything. Caden makes the familiar new, beautiful, and exciting every single day. His interests are varied, and always changing. Some of his favorite things are The Avenger’s, Frozen, Zumba, soccer or playing the drums. The movie, “Grease” (the original, from 1978), is his current passion.
Caden’s music teacher played the music at school, and taught the students the hand jive. After watching the Fox musical live at home, Caden was hooked. He knows all the songs, and loves to pretend he’s Danny Zuko, with his hair slicked back and wearing the T-Bird uniform: a white tee shirt and a pair of jeans. He even met the original Sandy, Olivia Newton-John, at an event for the Children’s Miracle Network last year, when he was their Ambassador for the State of Pennsylvania.
The Style that Rocks
Fortunately, Jessica found Downs Designs Dreams, a nonprofit in Mentor, Ohio, that makes special jeans for people with Down syndrome and other disabilities. Their Executive Director, Karen Bowersox, started a company called Downs Designs® in 2010 and her second company, NBZ® Jeans, in 2014. Then last year she combined both businesses and set up Downs Designs Dreams, a 501©3. Downs Designs Dreams now provides jeans and pants with no buttons or zippers, making them easy to get on and off. Downs Designs® Jeans and NBZ® Jeans don’t sacrifice fashion for function…they look like jeans everyone else is wearing. Downs Designs® Jeans are for those individuals with the unique body shape of a person with Down syndrome and NBZ® Jeans are made for individuals of typical size but struggle to manipulate buttons and zippers. These features are very important for Caden.
Jessica didn’t want Caden to live in sweatpants, but he struggled to wear regular jeans. Jessica was frustrated, “I tried buying husky jeans but they didn’t fit right, they were too tight. Their fabric was too stiff and the waistband was uncomfortable when Caden would bend over. That really aggravated his GERD.”
“The jeans from Downs Designs Dreams fit Caden perfectly. They are super soft, stretchy and very comfortable. The best thing is that they don’t cause any GERD symptoms. That is amazing! Caden pulls them up and down by himself. He had never been able to do that in jeans before, only sweatpants. Caden is very proud to have fashionable pants.”
Karen, the creator and Executive Director of DDD, had a dream that “No more kids or adults with disabilities will feel out of place, uncomfortable or feel like they don’t fit in. Downs Designs Dreams is providing quality, stylish clothing to enrich the lives of people with disabilities and help them live a more satisfying and happier life.”
Caden rocks, without a doubt, and is always comfortable and incredibly stylish in his Downs Designs® jeans. So, whatever the day has to offer, whether it’s jumping in puddles, attending a Penn State football game, or mercilessly beating his parents playing video games, Caden and his Downs Designs®jeans go together, just like Danny Zuko and the T-Birds. Only Caden is much cooler than Danny, hands down!
~ By Janis Gioia
**I want to thank Janis for writing this beautiful story about one of our Downs Designs cutomers. Janiis Gioia is a freelance writer specializing in Success Stories and Content Marketing. Jan writes for many nonprofit and business clients who focus on helping children and individuals with special needs and their families. With a background in special education, Jan loves how the right words can comfort, motivate and inspire.