Congratulations not sorry, is the message that Down Syndrome NSW wants people to adopt this World Down Syndrome Day (March 21). The global awareness campaign is a chance to reframe the conversation and change the perception of what it means to be a person with Down Syndrome.
Fast Facts -Each year in Australia there are 290 babies born in Australia with Down Syndrome, also known as Trisomy 21. -More than 90% of pregnancies with a diagnosis of Down syndrome are terminated. -Across Australia it is estimated that up to 15,000 people are living with Down Syndrome, and they are leading happier and healthier lives than ever before.
Down Syndrome NSW CEO, Emily Caska, explains that there has been extraordinary growth in life expectancy for people living with Down Syndrome, now 60+ years of age, compared to just 25 years of age in the 1980’s. This is attributed to medical advancements, greater health care and better overall quality of life.
“We should absolutely be saying congratulations not sorry to people expecting a baby with Down Syndrome! There is nothing to be sorry about. Day after day we connect with people thriving throughout their childhood, their school years and into employment,” explains Caska.
Six-month-old Amelia and her parents Lucy and Roberto, want to do their part in creating a more positive view of what it means to have Down Syndrome. The new parents share that the birth of their beautiful Amelia should have been a time of joy and celebration, but negative attitudes from well-meaning medical professionals about their diagnosis meant their pre and post-natal experience was tainted with fear and uncertainty.
Lucy recalls the moment they received the results from a genetic counsellor, who shared the news as if it was a devastating, terrible outcome.
“I remember thinking my baby isn’t dying, why is everyone so sorry?”
Now, half way to celebrating her first birthday Lucy shares that Amelia is in fact a thriving, happy, beautiful baby girl. “She loves playing on her play mat, she is active and strong. She can roll over onto her belly and looks so proud of herself when she does. She gives us endless smiles and sweet giggles and has enriched our lives beyond belief.” Most importantly, they are so proud that she is their daughter and excited for the future that’s ahead of her.
To support families like Amelia’s, Down Syndrome New South Wales will be there every step of the way, offering a range of programs to support them regardless of where they are in their journey. Some of these initiatives include: • The Congratulations Initiative educates medical professionals in the delivery of diagnosis and links a key support person with families expecting a child with Down Syndrome. • The Inclusive Education Program works with schools to strengthen the relationship between educators and allied health with a focus on helping the student reach their potential and most importantly enjoy their time at school. • Employment Connections partners with employers to help find meaningful employment for people with Down Syndrome.
To help celebrate World Down Syndrome Day and encourage a better understanding of what it means to live with the condition, Down Syndrome NSW are asking people to participate in the Lots of Sock initiative on March 21. The idea behind Lots of Socks is that socks come in all shapes, sizes and designs, just like each of us! By wearing our most amazing, colourful or mismatched socks, we’re celebrating our differences and creating a more inclusive community for everyone. Head to lots-of-socks.raisely.com to participate.
Families who want to connect with Down Syndrome NSW are encouraged to do so by emailing
