Tracey Giles knows expectant mothers of children with Down syndrome need to feel supported and have access to accurate information.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
And, in her role as page administrator with the T21 Mum Australia Network, she draws on her own personal experience to ensure this transpires.
The young mother-of-four doesn’t want others to be bombarded with misinformation during this difficult period as this is what happened to her.
Sixteen weeks into her first pregnancy, Tracey found out her baby had this genetic condition.
She describes Down Syndrome as having a “bit extra”.
Our bodies are made up of millions of cells. In each cell there are 46 chromosomes. The DNA in our chromosomes determines how we develop.
Down syndrome is caused when there is an extra chromosome so those with the condition have 47 chromosomes in their cells instead of 46. They have an extra chromosome 21, which is why it is also sometimes known as trisomy 21.
Unfortunately, at the time, most of the information and advice she received focused on the negative while reinforcing the limiting stereotypes associated with the Down syndrome.
Her eldest daughter Lily is now 8 years-old and just like her siblings, she is unique with her own talents, abilities, thoughts, and interests.
Sitting up at the interview table, she politely requested some paper to draw on and then her mum’s phone to show me some photos.
According to Down Syndrome Australia, most of the young people growing up with the genetic condition today will lead quite ordinary lives in the community.
Some may not need much help to lead an ordinary life, while others may require a lot of support.
October is World Down Syndrome Awareness Month and the T21 Mum Australia Network have put together an enlightening slide show that challenges status quo.
Professional photographers from all over the country agreed to be part of the project and gave each parent a free portrait.
Tracey says Lily is featured in the video which can be viewed on the facebook page.
The unique page is set up in a manner that allows mums to connect with others who have a child the same age.
It does this by establishing birth groups and each has its own administrator.
“I help out with the pregnant mums group,” she explains.
“For me termination was never an option but I can help these mums out during this difficult time whatever they decide. I can provide balanced information from my own experience.”
The page is not just about swapping photographs, Tracey asserts.
It provides a genuine connection.
The network encourages community participation, run events (both online and in real life), celebrate milestones, and share true friendships.
With the aim of bringing about a change when it comes to the negative stigma associated with Down syndrome.
...Children with Down syndrome are not lazy, stubborn, and definitely not always happy. Children with Down syndrome don't always like hugs or naturally like music. These are all stereotypes associated with the diagnosis. Children with Down syndrome are just children. They are individuals with ranges of abilities, interests and personalities….