Let’s talk about Down syndrome

Helen and her two daughters pose and smile for the camera, a family photo. Helen an her older daughter both have brown hair and brown eyes, her younger duaghter has blue eyes.

Let’s talk about Down syndrome

Helen Akubue, one of our regional support officers to our Uniting disability operations managers, talks about her experiences having a child with Down syndrome.

In February 2015 my little family of three grew to four with the much awaited arrival of our second daughter Freya. Twenty four hours after her birth, we were strongly advised to test for trisomy 21. My partner and I looked at the paediatrician in confusion, and he told us the better known term is “Down syndrome”. Six days later we had a result that was positive.

Freya has been a blessing to our family and I could not have hoped for a better child to join us in this life. It is an understatement to say that it has been an opportunity for personal growth. All of us (friends and family) have increased empathy and are now focusing on raising awareness for inclusion for individuals with Down syndrome.

I am glad to share that having a child with this condition has not hampered our family’s life or lifestyle in anyway. I work part-time like many mums with young children, we attend festivals, go on holidays, protests and she goes to day care with her older sister Adanna (4 years old) and will move into preschool when she turns three next year. Apart from making some time during the week for therapy, our lives have continued much the same as other families. Freya’s therapy does not even feel like therapy but rather feels like focused play.

October is Down syndrome awareness month and I am pleased to be part of a campaign that has been coordinated by T21 Mum’s Australia, a Facebook group that connects mothers of children with Down syndrome, giving parents a supportive space to discuss developmental topics, share milestones and successes.

Members are one post away from the collective knowledge of thousands of parents who are all in similar positions. It is a peers group, managed by people who also have children with Down syndrome.

T21 Mums appealed to photographers nationally to donate their time and skills to take professional shots of our children. I am proud that Freya was involved:  we found a photographer who captured her beautifully. All the photos have been combined on a slideshow with a positive message that T21 Mums hope will help combat the negative stigma that is associated with a Down syndrome diagnosis. I invite you to take some time to watch the presentation and share it; you will be doing a good contribution to our cause. https://www.facebook.com/t21mum/videos/1466639570089599/

Trisomy 21 and Down syndrome

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. They have an extra chromosome 21, which is why Down syndrome is also sometimes known as Trisomy 21.

Although we know how Down syndrome occurs, we do not yet know why it happens. Down syndrome occurs at conception, across all ethnic and social groups and to parents of all ages. It is nobody’s fault.

People with Down syndrome have some characteristic physical features, some health and development challenges, and some level of intellectual disability.

A test for Down syndrome can be carried out before a baby is born. Down syndrome is usually recognised at birth and is confirmed by a blood test. It was named after Dr John Langdon Down who first described it.

Contact us

For more information about our services for people with a disability or how Uniting works with the NDIS, get in touch on 1800 864 846 or email ask@uniting.org

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