Porter’s Story

Five-year-old Porter is a runner. It doesn’t matter that his ankles are extra flexible or that he needs braces to keep his legs in alignment. The boy can run — especially when he knows there is fun nearby.

“Porter is constantly on the go,” says his mom, Danielle. “He’s so friendly and outgoing that he can’t want to get to his next adventure.”

Slow start, but picking up steam

Born with Down syndrome, Porter has faced a series of challenges related to his condition. He has ear tubes, asthma and extremely low muscle tone.

“Porter didn’t learn to walk until he was 3 years old,” Danielle says. “Now, he’s running and his little brother is teaching him how to climb! It’s wonderful and terrifying all at the same time.”

One of Porter’s favorite places in the whole world is Sesame Place in Langhorne, PA, where he can visit his favorite Sesame Street characters, Elmo and Abby. Porter loves playing with stuffed versions of the pair, animatedly moving the characters as they “talk” to each other.

Along with watching Sesame Street, Peppa Pig and Doc McStuffins, Porter loves to play with his siblings, swim (his dad is a swim coach), and ride horses as part of a therapeutic riding program. Thunder and Fozzy are his favorite horses, he says.

When asked what he wants to be when he grows up, Porter says, “I want to be Elmo!” Danielle clarifies, saying, “I think he’d love to work at Sesame Place one day.”

Upcoming milestone events

For now, Porter and his family are looking forward to more immediate plans: Porter is starting full-day kindergarten in September. He’ll get to ride on the same school bus as his 7-year-old sister Penny. In the mornings, he’ll get extra learning support; the afternoons will be typical kindergarten.

“The guidance we’ve received from the Trisomy 21 team at CHOP has helped us ensure Porter is growing and learning to the best of his ability,” Danielle says. “They’ve been our sounding board and have helped us advocate for Porter so he can reach his full potential.”

On Oct. 1, Porter and his family will attend their sixth CHOP Buddy Walk and Family Fun Day. Their team, Porter’s Peeps, is raising money to support care, research and support programs at CHOP for children with Down syndrome. This year’s event is extra special to the family: Porter was named a Patient Champion and will represent hundreds of other children like himself.

“The CHOP Buddy Walk is the most phenomenal experience for our family,” Danielle says. “We have more than 100 people on our team and everyone comes out to support Porter and other kids with Down syndrome. It’s a wonderful day.”