Down Syndrome: Eve's Story

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When Eve celebrates her 16th birthday in August, it will be filled with friends, family, music and dancing. The theme of the party is “Paris” — a perfect match for Eve’s love of fashion, travel, makeup and glamour.

Eve “Eve loves to have fun,” says her mom, Suzanne. “She has a full personality, and she’s really well-rounded. She loves music, dancing, fashion and shopping. She also loves sports, particularly soccer and tennis.”

Eve was born with Down syndrome and several related conditions. She has been a patient at the Trisomy 21 Program at Children's Hospital of Philadelphia (CHOP) since she was a year old and regularly sees behavioral pediatrician Mary Pipan, MD, Director of the Trisomy 21 Program.

Surpassing all expectations

Children with Down syndrome (also known as trisomy 21) often have a multitude of health conditions. Eve certainly has had her share everything from multiple ear infections to a congenital heart defect. She's had multiple surgeries at CHOP and continues to see specialists to monitor and treat her thyroid, sleep apnea and heart conditions, as well as her food allergies.

In the past few years, however, Eve’s medical issues have stabilized. She has always thrived despite her multitude of medical issues and doctor appointments. She's a fighter. Her academic and social life are now blossoming due in no small part to her determination and grit. Suzanne credits the speech and occupational therapy Eve has had for her success, as well as Eve’s hard work.

"Everything is a breakthrough for Eve. She always surpasses our expectations," Suzanne says. "We didn't know if she would ever talk or walk or read, but she can do all of those things and more. She loves to travel and learn new things. She's always exploring and her interests are unlimited."

Eve attends a public high school in Gloucester County, NJ, where she is in a combination of resource room, self-contained and general education courses. She particularly enjoys science and cooking classes with her typically developing peers. Eve is hoping to try out for the tennis team soon and would like to become more involved in school clubs. She loves high school.

“I always felt that her being around typical-developing peers is the most important thing, and for her to have good role models,” explains Suzanne. “I’ve always advocated for that, but it has been difficult getting her integrated over the years.”

A love of exploration and growth

Eve shares her love of fashion and music with her older sister, Madeline, who is a junior at Hofstra University and is currently spending a semester abroad in Italy. Eve's love of travel was sparked by numerous family trips to the Caribbean islands and Disney World.

Recently, Eve’s parents noticed a maturation of her social skills. When she was younger, she would share anything and everything that she was thinking. “We’ve worked hard to get her to learn when to keep some things in her head and not say them aloud,” Suzanne says.

“We’ve had her in speech therapy since birth before she was verbal. I will never give up on improving her speech," says Suzanne. "Her ability to communicate appropriately is our #1 concern. I can’t stress how amazing her therapists have been, and now she’s in this social skills group that has been very helpful and the kids have become friends. Eve never complains about going. I’m so appreciative of that.”

Eve loves to hang out with friends, play mini-golf, shop and go to restaurants. She’s physically very active: She plays soccer in Special Olympics each year, plays tennis year-round, and participates in a therapeutic riding program, private dance therapy and fitness classes.

Suzanne says Dr. Pipan has helped the family navigate Eve's developmental milestones and advocate for her at school. Dr. Pipan has also recommended programs and services that could benefit Eve.

“Every year, Dr. Pipan asks just the right questions," Suzanne says. "She knows what kids with Down syndrome are more susceptible to than the general population, and it’s not just the developmental stuff. She wants to know how Eve is doing at school. She looks at patients holistically.”

Dreaming big

If you ask Eve what she wants to be when she grows up, she won’t hesitate to tell you: a scientist. She loves science and biology.

“I feel like whatever job she is in, she will be such as asset because of her ability to communicate and be positive, coupled with the fact that she’s very conscientious about whatever work she does,” Suzanne says.

Eve and her family have participated in the CHOP Buddy Walk® or the National Down Syndrome Society Buddy Walk every year since she was born. The close-knit family of four is extremely grateful for the Trisomy 21 Program and the care and support they all have received from CHOP over the years.

“It's comforting to know that there is a whole team of people looking out for our kids, people who are constantly learning and researching Down syndrome," Suzanne says. "They are there to guide us through every chapter of our life.”

Thanks to CHOP and her family, Eve has matured into a kind, curious, playful and determined teenager. She's excited to represent other kids with Down syndrome as a CHOP Buddy Walk® Champion for this year's event in October 2019.

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