That’s the message being shared this World Down Syndrome Day on Thursday, March 21.
The sentiment is part of a new campaign from Down Syndrome NSW that encourages people to reframe the way a Down Syndrome diagnosis is perceived and reframe the conversation and perception of what it means to be a person with Down Syndrome.
Down syndrome, or trisomy 21, occurs when a person’s cells contain an extra chromosome number 21. The life-long condition may cause delays in learning and development.
New parents Lucy and Roberto reveal the birth of their daughter Amelia, who was born with Down Syndrome, should have been a time of joy and celebration. However 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?”
Emily Caska, Down Syndrome NSW CEO points out the 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. The shift 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, she says. “There is nothing to be sorry about. Day after day we connect with people thriving throughout their childhood, their school years and into employment.”
With Amelia now half way to celebrating her first birthday, Lucy shares she is in fact a thriving, happy, beautiful baby girl. The pair say they are immensely proud and are excited for the future that’s ahead of her.
“She loves playing on her play mat, she is active and strong,” says Lucy. “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.”
A range of initiatives from Down Syndrome NSW aims to support new parents and educate education and medical professionals about they way they think about Down Syndrome.
Each year in Australia there are 290 babies born in Australia with Down Syndrome, also known as Trisomy 21. About one in every 1000 babies in Aotearoa New Zealand is born with Down syndrome.
This year Down Syndrome NSW is marking World Down Syndrome Day with the Lots of Socks fundraising initiative, encouraging people to colourful or mismatched sock to celebrate everyone’s unique differences.
