Lily’s Story

Sports Star

Fifteen-year-old Lily prefers basketball shorts to dresses — and she loves sports more than anything.

She plays basketball, flag football and baseball, and likes to snowboard and swim. She’s very involved in the Special Olympics, manages the girls’ soccer team and participates in track and field at her high school. She knows all the Philly sports teams, has attended several games and has even met some famous players, including Sixers center Joel Embiid and Flyers captain Claude Giroux.

“She has a really amazing knowledge of sports,” says Lily’s mom, Carolyn Seagraves. “She can rattle off the names of the players on both sides of the court or field.”

This fall, Lily and her brother, Nate, who also has Down syndrome, will lead a team of their own on Oct. 7, 2018, at the CHOP Buddy Walk® and Family Fun Day, which raises funds for the hospital’s Trisomy 21 Program.

“It’s great for younger parents to see older kids with Down syndrome who are doing well,” Carolyn says. “And it’s a nice opportunity for our friends and family to come out and support Nate and Lily.”

Overcoming challenges

Lily was diagnosed with Down syndrome at birth and had surgery to repair a heart defect when she was 5 weeks old. Then, two years ago, she was diagnosed with celiac disease and started a gluten-free diet. It’s been challenging at times, but Lily has adjusted very well, says her mom: “We’ve found lots of gluten-free options. Now she can go out without me and I know she knows what to eat and not eat.”

Lily’s parents, Carolyn and Jeff, first brought her to CHOP after they noticed that something seemed “off” about the way she walked. “She was having difficulty with her gait,” Carolyn says, “and it was getting worse.” The CHOP team fitted Lily with shoe inserts, which allowed her to continue participating in the activities she enjoys.

Last summer, for example, Lily attended Camp PALS, a weeklong camp for young adults with Down syndrome. Each camper is matched with a typically developing peer and can participate in activities like karaoke, dancing and swimming. She and Nate also attend Camp Bournelyf together, and they usually perform a song at the camp’s closing show.

Lily also loves her woodshop class at school. “I made a Monopoly board, a cuckoo clock, a tool box, a pencil holder, a bookshelf and a Batman tray,” she says. “It’s really fun.”

Looking ahead

Lily just finished her freshman year of high school, and she has big plans for the future: She wants to go to college, live in an apartment, and get a job working with children.

Whatever Lily chooses to do, her family will be there to support her, Carolyn says: “I believe Lily will be able to live independently or somewhat independently with support.

“She’s outgoing, inquisitive and stubborn,” Carolyn adds. “When she makes up her mind, there’s not much she can’t do.”