Preparing to have a baby is usually an exciting celebration, but for Stephanie Rodden the experience was tainted by initial isolation and uncertainty after she found out her new addition would likely be born with Trisomy 21, better known as Down syndrome.
“When I was pregnant with my second child, we went to our obstetrician for our 12-week check-up and he said, ‘You’ve got a decision to make’ before he even said hello or what the diagnosis was,” Stephanie said.
She knew that more tests wouldn’t change her mind and that she wanted to progress with the pregnancy regardless of the diagnosis.
And despite how overwhelmed she was, Stephanie’s doctor was unable to put her in touch with anyone who could help her with what to expect.
“I asked if there was anyone he could connect us to in the community and he wasn’t able to do that,” Stephanie said.
After Stephanie’s son Lincoln was born, she found an incredible network of other mums online and wanted to find a way to create the support for expectant parents that she didn’t have access to.
“I thought, well, wouldn’t it be lovely for families at that point of diagnosis to receive something that they knew where to go to where they could see other families from Australia, read inspirational quotes from those families and just get that connection.”
She founded Celebrate T21, a social enterprise designed to do exactly what the name suggests: celebrate those born with Trisomy 21 and their families.
Stephanie sought the help of fellow mum Alexis Schnitger, hoping to use an iconic arrow symbol she had created.
“Families including young adults with Down syndrome are getting it as tattoos and it’s mind-blowing, thousands of people around the world,” Alexis said.
“It’s still incredibly humbling more than anything else.”
That symbol is used throughout the Celebrate T21 photobook, an annual creation showcasing the diversity and achievements of people with Down syndrome and providing information for families about where to access support.
This Friday, Celebrate T21 is launching the latest edition, with the canvases of the images included covering the walls of the Project Contemporary Art Space in Wollongong.
“We’ve now distributed more than 4500 books and that includes some in the UK,” Stephanie said.
“This is our fourth book, and we’ll also be doing a callout, when we launch this book, for our fifth book.”
A weekend of events, including the launch, a sold-out gala dinner and a picnic day, is expected to attract people right across the country who are showcased in the exhibition.
“Really, it’s about raising awareness, showing the diversity, and we’ve got families represented from every state,” Stephanie said.
But the experience is not just for people with Down syndrome and their families.
“What was really lovely last time was just the general public and walk-ins, and seeing the impact that the exhibition also had on them,” Stephanie said.
“That impact of listening to people’s stories and I guess that makes people reflect, too, on what their misconceptions might be.”
And despite its national reach, the Illawarra organisation is also making leaps locally.
Celebrate T21 has established a therapy-based playgroup and partnered with groups such as the Illawarra Music Foundry to offer singing lessons and musical experiences.
“We’re so lucky in the Illawarra that there are so many other businesses willing to support and get on board,” Stephanie said.
Through collaborating with other groups like Down Syndrome Australia, pregnancy support networks and TwentyOne Gifts, Celebrate T21 is part of a holistic approach for parents and their children.
“There’s still people falling through the cracks but the fact that we’re working together as a collective, which I think is also unusual in this space, we’re able to get more of a reach,” Stephanie said.
And despite Stephanie’s difficult start navigating how to approach her Lincoln’s diagnosis, she said the whole experience had added even more joy and meaning to her life.
“He’s incredible. What he’s awoken me to, and what my priorities are now and what’s important and not important, and how that’s made me a better person, is all because of him.”
The exhibition will run until 10 September at Project Contemporary Art Space.
For more information or to contact the organisation, visit the Celebrate T21 website.