Trisomy 21: An Independent Woman’s Story

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If you’re out and about in Phoenixville, PA, you may very well run into Julianna — that’s her stomping ground.

Barista She may be working as a barista at the Soltane Café or the Steel City Coffee House and Brewery, where she’s also a regular on open mic night, presenting her original poetry. You can often find her at the Phoenixville Y, in a Zumba or yoga class. Some days she volunteers at the local animal shelter. She might also be in her apartment, helping make dinner or hanging out with her housemate, Betsy.

Julianna is very much a typical 30-year-old enjoying life. The fact that she has Down syndrome is just another facet of who she is.

“I love working as a barista,” Julianna says. “It’s my passion and my hobby. Ever since I was 14, I wanted to be a barista.”

Everyone knows her

Open Mic Her father, Jon, says, “She’s always been very social, so it’s the perfect job for her. She lives quite independently, with a housemate and a support person. Phoenixville is a friendly, safe environment for her. She knows half the people in town.”

Julianna “grew up” in the Camphill Movement, an approach that follows the holistic Waldorf education model. She attended Camphill Special School in Glenmoore.

She’s had the opportunity to travel, going to Israel, Ireland and California. Until five years ago, she lived at Camphill Soltane, a community in Phoenixville for young adults with developmental disabilities that teaches vocational and life skills.

Julianna is a star of Camphill Soltane. “She’s the first one to live in an apartment off campus,” Jon says. “It’s been great for her.”

Semi-independent living for people with trisomy 21

Julianna and her housemate get help from a rotating group of staff who live at the apartment. Since neither woman drives, the support person takes them grocery shopping and to activities they can’t walk to. They get help planning meals and cooking, but take responsibility for keeping the apartment and their rooms clean.

“I love cooking, especially making pasta,” Julianna says. “I’m a master of frying up mushrooms. Two of the staff are vegan, so we eat a lot of vegetables and other healthy things.”

One of the staff always stays overnight, “so someone is here in case we need them,” she says.

Her dad says the arrangement allows Julianna her well-earned independence, but also provides the support she needs. “She’s really quite happy,” he says. “I think it’s helpful for parents of children with Down syndrome to know there’s a future for their children and that things will change for the better.”

T21 Program reinforces healthy habits

Julianna’s parents found the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP) a couple of years ago. She has the mosaic form of Down syndrome, a rare type accounting for only 2% of affected persons. Instead of every cell having the extra copy of chromosome 21, in those with mosaic T21, only some cells have the extra copy.

“We’ve been very lucky, medical-wise,” her father says. Her only cardiac issue was an atrial septal defect, a hole in the wall between the two upper chambers of her heart, which spontaneously closed. She had early intervention to address her physical and developmental delays.

“There’s a local doctor who has a large practice of patients with special needs, and given she’s been fairly healthy, he could manage things,” Jon says. “We’re glad we found CHOP’s T21 Program. We hadn’t realized there was a world-famous center right down the road.”

The biggest benefit from the Trisomy 21 Program has been to confirm and reinforce what they already knew. Julianna has sleep apnea, and now she’s more consistent about using her C-PAP machine because T21 Program Medical Director Mary Pipan, MD, emphasized it. Same goes for wearing orthotics to help her feet.

“Having another voice from outside Julianna’s world tell her these things brought gravity to it,” Jon says.

As for Julianna’s opinion of the clinic, which treats adults as well as children with T21: “I really liked it. Everyone was so nice.”

Motivated to stay healthy

Julianna has also taken to heart the advice to live a healthy lifestyle. “I know it’s important to eat healthy and to exercise,” she says. “That’s why I love Zumba. I advocate it especially for people with Down syndrome. If you’re overweight, you have to work out. With Zumba, you get a good workout and have fun. It helped me lose a lot of weight. I also walk everywhere I can. I can walk to both my jobs.”

So, the next time you’re in Phoenixville, stop in one of the coffee shops where Julianna works. She will be more than happy to make you a mocha latte, cappuccino or, her personal favorite, a dirty chai. “It’s chai with espresso and milk,” she says, “and it’s fabulous.”

Just like her.