On World Down Syndrome Day, we celebrate inclusion, awareness, and the incredible individuals and families who help shape our understanding of what life with Down syndrome truly looks like.
In this interview, Sumita spoke with Priscilla and Sam, mum and dad to baby Thomas, about their journey so far – full of love, milestones, and a whole lot of joy.
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Meet Thomas
Thomas is nine months old and already full of personality. “He has the biggest, most expressive eyes and the sweetest little giggle,” Priscilla shares. “He’s very relaxed, very chill… and he loves people” Sam adds. From a young age, Thomas has shown a natural warmth and sociability. Whether it’s family, friends, or even new faces, he’s happiest when he’s connecting with others. “We feel like he’s going to be the life of the party,” Priscilla laughs. “Well… he already is.”
Celebrating Milestones—On His Own Timeline
Like many parents, Priscilla, Sam and their extended family celebrate Thomas’s milestones—but with a mindset that focuses on his individual journey. “We decided we wouldn’t follow traditional milestones,” she explains. “We’re just really interested in his own development and how he’s progressing.” One recent moment stands out: “I was feeding him, and he grabbed the spoon… and then fed himself. That was very, very exciting.” It wasn’t just the action, it was the culmination of effort, patience, and growth. Beyond that, Thomas is becoming increasingly social, recognising familiar faces and responding to loved ones, including grandparents and extended family.
The Power of Support
Thomas was born with a heart condition, something common amongst babies with Down syndrome. Through this, the family found strong support networks. The HeartKids Association has been a key part of their journey, offering connection and community through check-ins and family meetups. “They’ve been a really big source of support for us,” Priscilla says. Alongside this, Thomas works with a team of therapists—including occupational, physiotherapy, and speech therapy professionals. “They celebrate Thomas’s success just as much as we do,” Priscilla and Sam share. “They’re genuinely excited to see him progress.” Support through the NDIS has also played an important role in accessing these services, something the family recognises as invaluable.
What World Down Syndrome Day Means
Before Thomas was born, World Down Syndrome Day wasn’t something that was on their radar. Now, it means so much. “We want people to know how amazing a life you can have with Down syndrome,” Priscilla says. For their family, the day is about raising awareness and most importantly, normalising what life really looks like. “We do the very normal things that all families with a baby do. We just absolutely love having Thomas in our lives.” One of the biggest shifts came from moving beyond uncertainty. “When we first found out, we didn’t know what life would look like,” Sam shares, “Now we can show it’s the same. He’s happy sometimes, he’s grumpy sometimes, he makes mess… just like any other child.”
Not Different—Just Human
A powerful message that comes through clearly is this: “It’s not scary different. It’s great. We love it, and we wouldn’t change it for anything.” World Down Syndrome Day creates space for families like Thomas’s to share their stories, helping others who may be at the beginning of their journey. Representation matters. Stories matter. And seeing real families living full, joyful lives can make all the difference.
A Life Full of Light
When asked what else they’d like people to know, their answer is simple and heartfelt. “He’s just brought so much light into our lives… and into the lives of everyone he meets.” From doctors and therapists to neighbours and friends, Thomas has already made a lasting impact. And this is just the beginning. “We’re so excited to see where his life goes… and the lives he’ll touch as he grows.”
Final Thoughts
Thomas’s story is a reminder of something simple but powerful: every child is unique, and every journey unfolds in its own way. On World Down Syndrome Day, we celebrate not just awareness, but acceptance, joy, and the richness that diversity brings to our communities.
