World Down Syndrome Day is a global moment to recognise the rights, inclusion and contributions of people with Down syndrome, and to challenge the barriers that still exist in communities around the world.
This year’s theme, Together Against Loneliness, highlights the importance of connection and building a genuine sense of belonging. Research shows that 39% of people with intellectual disabilities often feel lonely, compared to 14% of people without disabilities (Bishop, Llewellyn and Kavanagh, Australia, 2024). Behind these figures are real people, real families, and real experiences.
For George and his family, belonging has never been accidental. It has been built through high expectations, strong advocacy, and being surrounded by people who genuinely care.
In her own words, George’s mum, Maria, reflects on raising her son, navigating early challenges, and why connection and community matter.
Introducing George
George has just turned 35.
Maria describes him simply and honestly: “His two favourite things are food and girls (in that order).”
“He is social and affectionate (on his terms). He is cheeky and has a dry sense of humour (like his grandfather).”
George enjoys bowling, going to the movies, drumming, singing, dancing and watching television. He loves his TV Week magazines. Staying at fancy hotels and going out to dinner bring him joy.
And some of his greatest joy came from time spent with his grandmother. As his mum says, “They were inseparable.”
When the path changed
George was born five weeks premature and spent that time in special care. Nothing was raised with the family during that period regarding disability or health issues.
At six weeks of age, concerns were raised during a routine appointment, and they were advised to speak with a paediatrician. “At his nine-week appointment, the paediatrician refused to test for Down Syndrome adamantly stating George did not have it.” During that same visit, an abnormality was identified when listening to his chest, though it was described as not urgent.
Soon after, George became unwell. Fearing bronchitis, their GP sent them to the Children’s Hospital for x-rays. He was admitted for five days in heart failure, with oxygen levels below 80%.
A cardiologist assumed George had Down syndrome and explained that the type of heart disease he had was common in children with Down syndrome. Testing was undertaken. At four months of age, the family received confirmation that George had Down syndrome (Trisomy 21). At five months, he underwent open heart surgery.
Looking back, Maria describes that period as overwhelming.
“It was quite harrowing thinking you had a healthy baby and a few short months later to be hit with everything.”
That experience also reshaped how she viewed the medical profession. Because of the paediatrician’s refusal to test, she found her trust shaken.
As she reflects, “All subsequent doctors had to prove themselves to me which was unfair on them.”
It was the beginning of learning to question, to advocate, and to rely on her own instincts.
Trusting your instincts and raising the bar
From those early experiences, advocacy became part of everyday life. If she could go back and tell herself anything in those early days, her message would be clear:
“Trust my gut, ask questions, demand other opinions, don’t blindly believe just because someone has a title.”
There has always been a level of doubt in the background, whether expectations were realistic, whether the right schooling choices were being made, whether service providers were the right fit.
Over time, that internal dialogue shifted.
“Always have high expectations, trust your gut, everything will work out as it is meant to.”
Advocacy, for her, is not abstract. It is practical and consistent.
“If I think his needs are not being met I have no qualms about speaking up and finding a solution in George’s best interests.”
Holding high expectations has never meant forcing George into someone else’s timeline. It has meant recognising that he does things in his own way.
As she puts it: “Patience, patience, patience! Thought I had some, then George came along. George does things in his own time. At his own speed. And I have had to learn to accept this for my own sanity and his.”
High expectations and patience exist side by side.
Choosing connection
There have been moments of misunderstanding. A handful of people have treated George as less.
Maria’s response has been firm and protective.
“I have just cut them out of our lives.”
For their family, connection is intentional. Under this year’s World Down Syndrome Day theme, Together Against Loneliness, her words are simple and direct:
“Connection means everything to George with actual family and chosen family.”
Belonging is not accidental. It is built by people who make the effort. As she explains:
“George is blessed to have many people in his life who genuinely care about him, interact with him, ask about him when he isn’t around and make an effort to understand him and communicate with him. This is what an ally does.”
Finding the right support
When George’s previous day program ceased, the transition period brought uncertainty. A staff member who had worked across both services suggested Fair Foundations. Maria reached out and organised a visit.
“I reached out and organised a visit. The space was bright, welcoming as were the staff. They were able to accommodate his needs.” She was also relieved that a couple of additional staff from his previous service would be employed by Fair Foundations, providing continuity in George’s care.
“The supportive feeling from the team greatly reduced my stress as I was quite anxious about this transition period. I feel I am treated as equally important as George and that my wellbeing is also important.”
Between the consistency of staff and the friendliness and care shown by the team, Maria says the transition “could not have been smoother.”
Within weeks, it was clear that George had already built relationships. He does not appear to struggle with isolation or loneliness, “He makes friends wherever he goes when he is in the mood.”
Support, for families, extends beyond programs. It includes trust, communication, and partnership.
What belonging looks like
For this family, belonging is built through everyday actions: being surrounded by people who genuinely care, holding high expectations, speaking up when needed, and making the effort to understand.
On World Down Syndrome Day, her message is clear:
“People with a disability, any disability, are people just like everyone else. They deserve the same opportunities, options and care as does everyone else.”
Together Against Loneliness reminds us that belonging grows when expectations remain high, and when people with Down syndrome are included, respected and supported as valued members of everyday community life.
Frequently Asked Questions
Down syndrome is a genetic condition caused by the presence of an extra copy of chromosome 21. It occurs naturally and affects people of all backgrounds. People with Down syndrome have diverse strengths, interests and abilities.
World Down Syndrome Day is observed globally on 21 March each year. It raises awareness about Down syndrome and promotes the rights, inclusion and wellbeing of people with Down syndrome around the world.
Research shows that people with intellectual disabilities are significantly more likely to experience loneliness. Belonging is about more than being present, it is about being known, valued, and included.
Being an ally means making the effort to understand, communicate and include. It means holding equal expectations and ensuring people with Down syndrome have the same opportunities and choices as everyone else.