Home News Face for change

Face for change

River Wards girl selected as ambassador for nonprofit Down syndrome organization.

Unbreakable bond: Bernadette Healey (left) gives her sister, Addison, a hug. Bernadette was selected to be part of the Nothing Down Ambassador Program, a nonprofit dedicated to changing the way the world views Down syndrome and eliminating the negative stigmas associated with disabilities. MELISSA KOMAR / STAR PHOTO

By Melissa Komar

By Melissa Komar

Star Editor

Bernadette Healey has a smile that’s contagious.

It’s an impossible feat to not feel the upward tug at the corners of your mouth when you see the 5-year-old River Wards resident’s outward display of joy as she dances around the room or interacts with her older sister, Addison, 10.

She attends preschool at the Fishtown Rec, loves her dog, Rizzo, and those who are closest to her affectionately refer to her as “Bee.”

Her smile denotes nothing of her diagnosis or the obstacles she’s encountered in her life thus far.

Bernadette was diagnosed with Down syndrome before she was born.

For her parents, Heather and Scott, it was difficult, but did nothing to alter their love.

“It was hard. It was like mourning the loss of something you didn’t have, but then, it was, ‘Yes, we have this diagnosis, but she’s still a kid. Let us have this baby and who cares about that,’” said her mother, Heather Healey. “It’s just like saying she had blond hair. It really doesn’t take anything away from her. She’s our Bernadette, and we’re going to love and embrace her for who she is.”

Addison was 4 when the Healeys became pregnant with Bernadette and were faced with what they should tell her.

“We both agreed. We don’t say anything. It’s still her sister. It’s still our daughter. That’s all that matters,” Healey said. “We’ve never made the diagnosis define her.”

Aside from being diagnosed with Down syndrome, Bernadette has been faced with everything but heart issues, according to Healey.

Two weeks after birth, Bernadette was diagnosed with Hirschsprung’s disease and had a colostomy bag placed at 2 months old to assist with her bowel functions. Two years ago, she had a tracheostomy after airway complications from tooth surgery.

Last year, her airway was reconstructed, but the tracheostomy was removed.

“She didn’t miss a beat. She’s saying more, she’s being outspoken. It’s amazing,” Healey said.

The 5-year-old River Wards resident was one of 33 individuals selected from more than 500 by the nonproft. MELISSA KOMAR / STAR PHOTO

Healey points to the health teams and Trisomy 21 clinic at Children’s Hospital as being integral to Bernadette’s progress.

Aside from overcoming major health issues, it’s the little milestones that Bernadette has achieved, with the help of therapists through Early Intervention and Elwyn, that are most significant.

“It’s the little things like Bernadette being able to feed herself with a spoon, and Bernadette finally being able to sit up at 9 months, or saying the word ‘Mom,’ at almost 3 years old,” Healey said.

The Healeys are hopeful Bernadette will enter kindergarten at Saint Laurentius next year, with speech therapy being the only additional service needed outside of mainstream curriculum.

“We’re very, very excited and hopeful because since the day she was born, Saint Laurentius took her under their wing. My oldest daughter goes there, and they did things for [Bernadette] when she was in the hospital and it’s nice to have a place where we know she’s already welcome,” Healey said.

And, she’ll continue with tap and ballet classes, which she has taken since she was 2½ years old.

“She’s just on the go, 24/7, like any other little kid,” said Healey, laughing. “She thrives when she is around other kids. Bernadette has a contagious personality and she makes people smile in a way they’ve never smiled before.”

And now, the rest of the world will know her smile.

Bernadette was selected last month by Nothing Down for this year’s Ambassador Program.

The New Jersey nonprofit is “dedicated to changing the way the world views Down syndrome and eliminating the negative stigmas often associated with disabilities. …through a web-based documentary series, photo projects, school programs and thriving social media campaigns,” according to cofounder Shannon Daughtry.

Cofounder Julie Wilson held a photo shoot in memory of her late sister, Dina Scoppa, who had Down syndrome.

Daughtry’s daughter, Raegan, who has Down syndrome, was one of 11 children featured in the photo shoot that went viral, being shared more than 100 million times, according to Daughtry.

The duo decided to use the photo shoot as a platform to start the nonprofit in January 2016.

Nothing Down started its Ambassador Program in fall 2017, with the intention of the individuals serving as the face of the nonprofit.

“By providing these amazing kids and adults a platform to shine, it educates the world that we are far more alike than we are different,” Daughtry said.

Bernadette was one of 33 individuals selected from more than 500.

“She is such an amazing girl and a strong fighter,” Daughtry said. “We are very blessed to know her and have her family as a part of our ambassador team.”

Ambassadors range in age from 14 months to 43 years and represent 16 states and Ireland, Australia, Canada, Tanzania and the United Kingdom.

“Ambassadors represent and assist the organization through community outreach, fundraising and social media promotion,” she added. “They work very hard to advocate for the Down syndrome community and to share the mission of Nothing Down. We showcase the potential of our ambassadors, and others with Down syndrome, so that not only new parents, but the entire world, can begin to see differently abled individuals in a new light.”

Aside from the Ambassador Program, one of the organization’s other main initiatives is its “Blessing Baskets of Hope.”

Nothing Down sends gift packages filled with resources, a gift for the mother and child, and a handwritten letter from a fellow parent to new and expectant parents all over the country whose child was diagnosed with Down syndrome.

Miss December: Bernadette Healey was featured in the December photo for the 2018 Nothing Down calendar. MELISSA KOMAR / STAR PHOTO

Miss December: Bernadette Healey was featured in the December photo for the 2018 Nothing Down calendar. The 5-year-old River Wards resident was one of 33 individuals selected from more than 500 by the nonproft.

Each year, the nonprofit creates a yearly calendar spotlighting individuals with Down syndrome. Bernadette was featured in the photo for December last year.

Additionally, Nothing Down produces documentaries and hosts several events, including the Nothing Down Walk and Family Fun Festival. The Healeys participated last year.

And, they’ll attend its World Down Syndrome Day Dance Party on March 16, where the ambassadors will be featured in a video.

For Healey, changing perceptions is important, but acceptance is at the heart of her dreams for her daughter.

“My hope for Bernadette is to always keep her tenacity and her love for others and her persistence. My hope is for her to have a dream and reach it. When the time comes and she learns about her diagnosis, I don’t want that to defeat her,” Healey said. “I want the community to embrace her for who she is, not for what her diagnosis is.” ••

For more information on Nothing Down, visit facebook.com/nothingdown or nothingdown.org.

Exit mobile version