SABC News - Trisomy 18 awareness march held on World Down Syndrome Day:Monday 21 March 2016

Trisomy 18 awareness march held on World Down Syndrome Day

Monday 21 March 2016 16:00

Neo Bodumela

Trisomy 18 occurs in babies born with an extra chromosome - leaving them with stunted growth and a life expectancy of barely a year.(www.trisomy18.com)

Hundreds of Kimberley residents in the Northern Cape marched through the city to bring awareness to a little known genetic disorder called Trisomy 18. The genetic disorder, also known as "Edwards Syndrome", occurs in babies born with an extra chromosome - leaving them with stunted growth and a life expectancy of barely a year.

The five kilometre walk to raise awareness was held on World Down Syndrome Day because of the similarities it bares to Trisomy 18.

While others walked to bring awareness aroundTrisomy 18, organiser Terri-Lee Jacobs is living with the syndrome after her daughter, Zara Jacobs, was diagnosed with the syndrome when she was five months old. Jacobs says after her diagnosis, she feared for the worst. "You must prepare yourself for the worst. I used to lie at night and I could not sleep because you are waiting for something bad to happen. Later on, I realised that I cannot let this get me down because I have to be strong for her as no one else is going to do it."

Those who attended the walk say they hope more awareness can be raised on the seriousness of the syndrome.

Jacobs says she hopes the walk will bring awareness about the rare disease. She says, "When she was diagnosed with this, I did not know that Trisomy 18 existed, and I can only imagine there are other babies out there. I don't know anyone else in the Northern Cape that was diagnosed with this. It is difficult if you don't have the support system."

The family of baby Zara say they hope that through the walk, a support group can be formed for other families with children who also have Trisomy 18.

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