Stephanie Rodden dreams of a world where no family should feel isolated, unsupported or pressured to terminate based on a Down syndrome diagnosis. She talks to LISA WACHSMUTH.
The "outdated narrative" around Down syndrome needs a new chapter, says Stephanie Rodden - and she's keen to help craft it.
She's the proud founder of Celebrate T21 - a support network which supplies families with a new diagnosis of Down syndrome with a beautiful photo book that celebrates the lives of those with an extra chromosome.
It's something she wishes she had access to when she and her husband Ben were told their unborn son Lincoln - now three - had that 47th chromosome, known as trisomy 21.
"You're presented with the medical facts about the condition, and when to terminate the pregnancy and brochures from Down Syndrome NSW - if you request them," the Wollongong mum said.
"But you aren't given anything which provides you with an insight to the families who have lived experiences of what it's like to raise a child who is T21, or how to connect with those families. This was one of the driving forces to create the book, so families would be able to connect with other families."
So Mrs Rodden, along with the T21 Mum Network Australia, sent a call out to photographers around Australia, with 58 of them donating their time to capture beautiful shots of 113 families. Those shots - and some of their heart-felt quotes - were captured in the book, also entitled Celebrate T21, which has been gifted tofamilies across the nation.
The concept not only gained national support, it caught the attention of UK charity, Wouldn't Change A Thing, which called on Mrs Rodden to help them make a similar book. Due to their reach, the charity has been able to gift close to 2000 of their photo books to UK parents.
Mrs Rodden isn't done yet, not by a long shot. She's now fundraising for a third book.
"Celebrate T21 would love to create a 2020 version of the book this year that is completely funded by the community. Our aim is to continue to gift and also distribute our books not only to the families but to hospitals, doctors' surgeries and schools.
"This would help educate and to cease the negative discourse often derived from outdated views of Trisomy 21, assisting in building and fostering an inclusive community.
"Because the majority of families who are given a diagnosis of Down syndrome report that they were given minimal to no support, along with outdated views and repeatedly pressured to terminate the pregnancy."
Nowra mother Kylie Cullen was one of those grateful to receive the book, when her son Luca was born with Down syndrome.
Lincoln enriches our lives beyond measure.Stephanie Rodden
"Celebrate T21 played an important role in our family from shortly after his birth while Luca was on the NICU at Wollongong Hospital," she said. "Here the amazing nursing staff presented us with the Celebrate T21 book to keep by Luca's cot and show our family and friends.
"In the same week Stephanie from Celebrate T21 came to the NICU and presented us with a gift pack including the book.
"This pack and Stephanie's advice and support meant the world. To connect with people that have been through it and are still going through it is very comforting, knowing you aren't alone."
To raise the funds for the new book, Mrs Rodden has received support from a range of Illawarra businesses to produce some special T21 T-shirts. Alexis Schnitger Design did the design work, and photographer Ann Young took the beautiful images of families and individuals with Down syndrome in them. Many of these were from the Illawarra and South Coast, as well as some from Campbelltown and the ACT.
They've been selling the T-shirts in the lead-up to World Down Syndrome Day - which is being celebrated around the world on Saturday March 21. Due to the COVID-19 threat, there's no specific events this year, but rather a virtual celebration of the lives and achievements of people with Down syndrome. The awareness day is also about creating a global voice - and advocating for people's rights, inclusion and well-being.
"The day is in line with the aims of Celebrate T21 - which are to educate, advocate and empower families with a prenatal or postnatal diagnosis of Trisomy 21," Mrs Rodden said. "Celebrate T21 dreams of a world where no family should feel isolated, unsupported or pressured to terminate based on a Down syndrome diagnosis."
Mrs Rodden, a teacher and a photographer, has also realised her dream this global awareness day - of producing a Vanity Fair style shoot of local people with the genetic condition. As well as her own, admirable, efforts she hopes more will be done to help families at the time of diagnosis - to direct families to support groups.
"I wish at the time of diagnosis my doctor was able to have directed me to groups such as 321 Pregnancy care, a Facebook group that aims to provide a safe and supportive online space for Australian women, who are facing a prenatal diagnosis of Trisomy 21 for their unborn baby," she said.
"Unfortunately, I only found out about the group T21 Mum Australia Network shortly after Lincoln was born. It is because of the connections made within the T21 Network I was able to connect with families to produce the first book."
Meantime Mrs Rodden and husband Ben are enjoying their own family life, with son Nate who started high school this year, and with the amazing Lincoln. He's just started pre-school - and is loving it - enjoys singing and dancing, and shares a close bond with his big brother. Not yet speaking, he is starting to sign and "understands everything".
"Lincoln enriches our lives beyond measure. He brings a tremendous amount of joy and love to our family and friends. I am constantly in awe of his beauty, inside and out. He is one amazing and magic little boy that fills our hearts with pride."