Two mothers, Sandra and Hilary, have been on a journey that they never expected and are here to share their stories in the hopes of creating a supportive community for other families who are going through similar experiences.
When Sandra was pregnant, she discovered there was a very high chance that her baby Ella (then known as Baby Bud) would have Down syndrome.
There was never any doubt in their minds that ‘Baby Bud’ would be perfect just the way they were. However, their immense love for their baby was accompanied by the fear of what it would mean for the baby's health, the life they’d be able to lead, and how they would participate and be included in the broader community.
They reached out to Down Syndrome Victoria, searching for information but found so much more.
‘Through DSV our world opened up and we were connected to not only information but a community of support that made my pregnancy and Ella’s first year of life much less lonely. Sonia [DSV's Family Support Manager] visited us in our home during those early weeks and connected me with a pregnancy care support group and a community of Victorian parents, and it made all the difference,’ Sandra said.
According to a 2021 report by Down Syndrome Australia, around 400,000 women in Australia become pregnant each year. Families rely on accurate and balanced information to make decisions about screening, pregnancy and parenthood. Down Syndrome Victoria takes a pro-information and pro-choice stance in decision-making, whatever that choice may be.
Hilary found that her son Daniel’s diagnosis required her to learn a lot about patience and gratitude.
‘After a traumatic early delivery and two anxious months in the special care nursery, I am able to appreciate the time we have with Daniel and focus more on appreciating the progress he makes. Every new milestone he achieves is a win.
‘He has brought so much joy to our lives. At 11 years old, he sang me his whale song, then went back to reading about killer whales. This was something I would not have foreseen with my preconceived ideas about Down Syndrome when he was born.’
World Down Syndrome Day
World Down Syndrome Day is a global awareness day that is celebrated on the 21 March. We encourage people to raise their voices in support of individuals with Down syndrome and their families. Together we can advocate for their rights, well-being and inclusion.
Down Syndrome Victoria offers support, encouragement, information, and resources to individuals with Down syndrome, their parents, families, professionals, and friends. This support covers all stages of life. Down Syndrome Victoria is dedicated to supporting people with Down syndrome and their families. They strive to help them achieve their goals and lead the lives they want.
Join us this World Down Syndrome Day in celebrating the unique and valuable contributions that people with Down syndrome make to our communities. Visit downsyndrome.org.au/vic for more information or support Down Syndrome Victoria by making a donation.
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