Christine Egan Physical Therapy

Over the past several decades the quality of life for people with Down syndrome has improved dramatically. The current life expectancy for a person with Down syndrome is 60 years, compared to just 10 years in 1960 according to the National Association for Down Syndrome. Individuals with Down syndrome are active contributors to their local communities and are encouraged today more than ever to pursue their talents.

Zoe Epstein is an exemplar of the empowered Down syndrome community.

“She really has surprised us in every sort of area of her development,” her mother, Lisa Epstein, said. “She has taught us all a lot.”

Zoe has practiced karate since she was five, graduated from high school, attended classes at the College of Marin and has ambitions to professionally advocate for disability rights. She has lived independently in the East Bay since she was 21 years of age. (Note: Zoe moved back with her parents earlier this year due to the COVID pandemic.)  To call Zoe “high-functioning” is almost an undersell.

“I’m excited to see where my advocacy will take me,” Zoe said. “I want to be an activist, I want to study activism in school.”

While in high school, Zoe flew to Washington D.C. with her father to lobby against “Law Syndrome”: a set of laws affecting people with disabilities. This dated legislation permits employers to pay disabled employees below the minimum wage. Zoe made the case that these antiquated laws prevent those with Down syndrome from flourishing to their full potential to Senator Diane Feinstein and other representatives.

“I really enjoyed the trip,” Zoe said. “I wanted to do it because I wanted to get to know more people with Down syndrome. It was something I hadn’t done before.”

Lisa — a writing teacher herself — said Zoe’s incredible command of language and sophisticated vocabulary has amazed her the most. For instance, Zoe created her own video segment for her high school’s TV show, narrating her everyday life with Down syndrome. The California Council for Exceptional Children awarded Zoe a prestigious “Yes I Can!” award for the exceptional self-advocacy production.

“I wanted people to know what it is like to be me,” Zoe said. “I wanted to let people know that even though Down syndrome is a part of me, it’s not all of me.”

The abilities of each person with Down syndrome ranges widely. Lisa considers her family fortunate that Zoe was born with such motivation and confidence, but acknowledges it was the family’s early hard work and encouragement that facilitated Zoe’s growth.

Lisa said she started Zoe on physical therapy soon after she was born, in addition to early intervention services that included a home teacher, speech therapy and occupational therapy.

“The learning curve was huge,” Lisa said of Zoe’s initial days of therapy. “I’m not going to say it’s been all rosey and easy.”

Children with Down Syndrome often struggle to crawl, walk, ride a bike or speak because of their lack of muscle tone. Low muscle tone is a critical symptom of Down Syndrome, but is also treatable. As a toddler, Zoe regularly saw Christine Egan MPH, PT C/NDT for physical therapy and Patty Toboni, MS, CCC-SLP for speech therapy. “Christine and Patty were instrumental,” Lisa says. Yet the sessions were tumultuous at times: Zoe crying in frustration, Lisa consoling despite her internal worry. Despite the sometimes slow, incremental progress, Zoe’s therapists and family maintained the long-term vision of maximizing Zoe’s potential. Even on the toughest days, Lisa always held onto a UCSF geneticist’s advice when Zoe was born.

“He said just take her home and love her like you love your other kids,” Lisa said. “We did work our butts off with her but you have got to give yourself a break and respite sometimes because that is good for everybody in the family.”

When Zoe was just an infant and Lisa’s uncertainty and grieving were at a peak, that simple advice became the mantra of the family.

“There’s a lot of people who are going to be telling you to do a lot of different things and some of them are going to work for you and your family and some aren’t,” Lisa said of advice she would give to expecting parents, “so follow your gut, do the best you can. Nobody is perfect.”

For further Down syndrome reading, check out the work of these national and local organizations:

NADS: National Association for Down Syndrome | Serving the Down syndrome community since 1960
NDSS: Human Rights Organization for Individuals with Down syndrome
DSCBA: Down Syndrome Connection of the Bay Area