While acceptance and inclusion of people with Down syndrome has come a long way, Albion Park mother Karyn Ellem said her six-year-old son Beau was still waiting for his first invitation to a birthday party.
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Mrs Ellem is helping organise the Step Up for Down Syndrome event in Wollongong on October 27 to raise awareness of the genetic condition that affects one in 700 to 900 babies worldwide.
She hopes to get at least 300 people to participate in the walk from Stuart Park to Wollongong Lighthouse and back to raise funds to provide support to people with Down syndrome.
"It's part of a series of events being held nationwide to raise awareness, acceptance and inclusion of children and adults with Down syndrome," she said.
"While things are much better than they were, and there's great services and support available, there's still some way to go in terms of inclusion.
"For instance Beau is six and he still hasn't been invited to a birthday party, which just breaks my heart, especially when his older sister Cody goes to so many parties.
"It may seem like a small thing, but it would make a big difference."
Mrs Ellem understands people's reservations - she struggled initially to accept that her newborn had the condition.
"We hadn't had any experience of it; we'd had all the tests done and everything came back OK," she said.
"I went into shock for the first week, but my hubby [Jason] stepped up to the mark to get all the tests done.
"Then after I accepted it he went to pieces, so I had to take control. We've always been there for each other and we have a lot of support from family, and now Beau's school."
Beau attends a special unit at Tullimbar Public School and like most kids he loves going to the beach and kicking the footy.
However Mrs Ellem said his hearing and speech problems made communication a little more difficult and there were some behavioural issues.
"We've had an unexpected journey with Beau and it can be hard - children with Down syndrome have health and development challenges and some level of intellectual disability," Mrs Ellem said.
"But it's not the tragic journey that most people would think. They are beautiful people and they live wonderful, fulfilling lives.
"We just want them to be allowed, and encouraged, to reach their full potential," she said.
Those interested in registering for the walk should visit stepupfordownsyndrome .org.au.
