Down syndrome: Neva's Story

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Confident and full of joy, Neva is all in — all the time. Whether she’s giving a tour of her Lower Merion home, showing off her tumbling skills or orchestrating a group hug, Neva, 11, loves being around people.

Neva Born with Down syndrome, also known as trisomy 21, Neva is a “sassy, happy-go-lucky and curious kid,” says her mom, Rosina.

From the moment she bounces out of bed each morning and puts on her signature square-blue glasses, Neva is on the go. "We have been very lucky with Neva's health since she was born," says Rosina. "We tell her she has super powers because she rarely gets sick."

Neva visits an endocrinologist regularly to monitor her hypothyroidism and an ophthalmologist annually, but otherwise is healthy, and — like most 11-year-olds — always up for an adventure.

Her bedroom is decorated in shades of pink, just like the sundress she wore to the Please Touch Museum earlier in the day. She and a friend spent hours exploring the museum.

“I like all bright colors,” Neva says. She loves wearing dresses, and it doesn't matter if they are new or hand-me-downs from her sister. “They’re new to me,” Neva explains.

Neva likes to play games, aspires to take beautiful landscape photos like her mother, and counts Chopped Jr. among her favorite TV shows. Sometime around the age of 3, she started calling herself "Lulu." The self-added nickname stuck.

Paying it forward

Neva's family looks forward to participating in the Children’s Hospital of Philadelphia (CHOP) Buddy Walk® and Family Fun Day on Oct. 6, 2019, as a way to say thank you to the Trisomy 21 Program team, which has helped them maximize Neva's growth and development, and to raise funds so other children with Down syndrome can receive similar life-altering care. This year will mark the family's second time attending the CHOP fundraiser at Villanova University.

Neva was a baby when her parents learned about CHOP’s Trisomy 21 Program and the types of special care and treatment offered. Now that Neva is nearly a teen, her parents want to lend their support to other parents who have children with Down syndrome. Neva is proof that these children can — and do — thrive when given the right tools and support.

“For us, it was more of a ‘What can we do to contribute’ thing, and our proximity and connection to Villanova made it a no-brainer,” Rosina says, noting Neva’s father, Shane, is a Villanova alumni, and the campus is located near their home.

“It should be a fun, family day,” Rosina says.

Living in the moment

Rosina uses words like "sassy" and "playful" to describe Neva; her little brother and best buddy, 8-year-old Kai, agrees.

“Neva has a great sense of humor and is just a pleasant kid to be around,” her mom says. "She lives in the moment. She loves playing games, hip-hop dance and gymnastics, and takes classes in both," Rosina says.

Like her family, Neva is a foodie. Her favorite restaurant is Benihana in Plymouth Meeting, PA. She loves cooking with her mom and watching cooking shows on TV. When she reads at night before bed, it’s often a cookbook.

When she grows up, she wants to be a chef, a dancer or a deep-sea diver.

She also makes how-to home videos for YouTube on topics like making her bed and packing her backpack. Neva made her first video at age 5; her mom now has hundreds.

“She is very clever and creative, and is also a big ham,” her mom says. Neva loves the spotlight — but can be shy away from family. 

Her siblings are her protectors. Gemma, 14, Finn, 16, and even Kai all look out for Neva.

Neva's impact

Neva has had a positive impact on her siblings, Rosina says, encouraging them to see beyond a child's physical or cognitive differences and see the person inside. All three siblings are quick to talk to children who appear different and to stand up for kids who are being ignored or picked on.

"We've always taught our kids that Neva, like other kids with disabilities, aren't different  they just have a difference, but we're all the same on the inside," Rosina says." I think growing up with a sister with special needs has really reinforced that for them. They don't see Down syndrome when they talk to Neva; they just see Neva."

Neva doesn’t see herself as different than her siblings, and her parents actively work to ensure she is not treated any differently. However, Neva can be stubborn, especially when she knows what she wants. She also tires easily due to low muscle tone, a common symptom of Down syndrome.

"She knows when she's reached her limit and isn't afraid to tell us," Rosina says.

Neva will start sixth grade in September 2019. She's mainstreamed with her peers in all classes except math and English, where she needs a bit of extra help.

Blazing her own trail

Rosina and Shane didn't learn about Neva's condition until after her birth.

"We didn't know what to expect when she was born," Rosina says. Neither she nor Shane had known a person with Down syndrome before. A well-meaning nurse at the hospital gave Rosina a book about raising babies with Down syndrome, which Rosina quickly threw away.

"It was written in the 1950s, was full of generalizations, and had some pretty grim statistics. It scared the heck out of me," Rosina says. "We decided we were going to treat her like our other kids and let her lead the way. She has been blazing her own trail ever since."

Neva continues to amaze her family – not only with what she can accomplish, but also by her fierce determination and unflappable outlook.

“She doesn’t let anything stop her,” Rosina says. When Neva first asked questions about Down syndrome, her parents explained the condition and that she had an extra chromosome.

Neva's response was succinct: "Cool."

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