A little Barrie girl, whose Down syndrome diagnosis shortly after birth came as a surprise to her family, is among an elite group.
Ruby Cordua has been selected as a 2020 ambassador for Nothing Down, an American organization whose mission is to show the world the potential of individuals with Down syndrome and to eliminate the stigma often associated with disabilities.
She's the youngest as well as the only Canadian chosen from among more than 500 applications as one of 29 ambassadors from around the world.
"Down syndrome is not what we thought it was," said 37-year-old Ashley Cordua, whose daughter was diagnosed about a week after her birth. "Ruby was always going to be our last and she completed our family in a way that I don't think a typical kid ever could have.
"It's brought our family together," she added. "This has given our family a direction to go in life."
And for Ashley, that means doing whatever they can to spread the word about Down syndrome.
"It's really not a scary thing," she said. "She was biggest surprise, but the best surprise of my life."
Ruby was born seven weeks' premature by emergency C-section on March 28, 2019 at Royal Victoria Regional Health Centre (RVH) after a routine ultrasound showed there wasn't enough movement.
Ruby's Down syndrome, which had not been detected during Ashley's pregnancy, came as a surprise to the family, which includes husband Brandon, five-year-old Lola, and three-year-old Jack. Twenty-seven previous ultrasounds showed nothing out of the ordinary and none of the distinguishing features often found in babies with Down syndrome, Ashley said.
"For babies who are born with Down syndrome, it's common for them to have a slew of medical issues," Ashley told BarrieToday during an interview at their south-end Barrie home. "Major cardiac issues, bowel issues, you name it. Ruby came out and not only was it a surprise that no one knew she had it, (but) she has no medical conditions whatsoever."
Even from the time Ruby was born, Ashley said it still wasn't clear whether she had Down syndrome, but the first indicators were the shape of her eyes and that she was spitting her tongue out.
It took about a week confirm the diagnosis through a blood test.
The baby girl was expected to spend around three weeks in the neonatal intensive care unit (NICU); the addition of a Down syndrome was predicted to keep her there another four to six weeks.
"Ruby left after 10 days," said Ashley, noting her daughter also holds the distinction of being one of the quickest discharges from hospital for a premature birth.
From almost Day 1, Ashley and her husband came into the Down syndrome community hitting the ground running.
"I knew nothing about this at all," she said, admitting the diagnosis "freaked" her out initially.
"You hear all of these stereotypes and all of this bad news and all of these bad things," Ashley said, adding the local support system was very helpful for her. "It really calmed me down."
And now she has taken on the role of providing support to other moms who are new to Down syndrome.
"Now it's real and we're actually making a difference," she said.
Ashley continues to learn and pass along that knowledge wherever, and however, she can.
"Down syndrome is not the end of the world," she said. "I think people automatically think of the worst. There's so many different spectrums and so many different levels across the board. For us, it's really just 'this is Down syndrome, this is our family, and this is what we do.' We're a normal family."
Ashley, who's a retired paramedic turned stay-at-home mom, says she has since learned that an at-birth Down syndrome diagnosis is not as unusual as she first believed.
"We were given a one-in-8,000 chance that she would have Down syndrome and this is our one-in-8,000 chance," she said while flashing a huge smile at her daughter playing nearby on the carpet.
Through the Nothing Down's ambassador campaign, Ruby and her family will help through community outreach, fundraising and social-media promotion. She has an Instagram profile at rockin_it_with_ruby and Ashley says it's her "mom mission" to grow the profile as much as she can.
Even though Ashley says the world's view on people with Down syndrome has changed for the better in the last five, 10 and 20 years, there's always more to do.
"Ruby was born at just the right time," she said. "Everybody is practising inclusion and the whole push on kindness and anti-bullying. I truly think that she was born for a reason. She doesn't give up for anything and I think she truly is going to make a difference."
Ashley says the ambassador program allows them to chart Ruby's progress as well as to share her story here in Canada.
"We're obviously brand spanking new to the Down syndrome world," she said, "but I'm noticing in Canada that there's not as much advocacy here as there is U.S., where it's huge."
In January, Nothing Down announced it was accepting applications for its ambassador program. The Corduas, who have lived in Barrie for about nine years, were in Mexico when they decided they would inquire.
"Never in my wildest dreams did I even think for a second that she'd get picked," Ashley said.
About a week ago, she popped into her junk mail folder and spotted a congratulatory email from Nothing Down saying they'd chosen Ruby as one of their 2020 ambassadors.
Nothing Down's goal is to provide support, advocacy, education and opportunities for individuals and families that have been touched by Down syndrome. In addition, the gorup runs several programs, including a nationwide World Down Syndrome Day (March 21) school program that celebrates differences and fosters acceptance among students.
Ashley hopes her family's story can help in a positive way.
"Trust us when we say it's really not a scary thing. We were blindsided," she said. "We never in our wildest dreams thought that this would be the direction our family would go, but we wouldn't trade her for anything. We're very lucky that she doesn't have any medical concerns and she's hitting all of her milestones. She's just... this is Ruby."
The youngster has followed the milestones of her siblings, says her mom.
"She's a big snuggler; you pick her up and she'll just go right into you," Ashley said. "She's just happy-go-lucky and she'll just sit there and play and never cry. She's just Ruby. We really lucked out.
"Her brother and sister were easy babies as well, but Ruby takes the cake there."
