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Support group helps destigmatise Down syndrome

East London woman drives organisation that assists new parents and children

Denise Taylor, 62, set up DSS East London Branch.
Denise Taylor, 62, set up DSS East London Branch.

Trisomy 21 — the extra chromosome which causes Down syndrome — also comes with an outstanding talent or two, and ushering it into the light brings joy to local hero nominee, Denise Taylor.

Taylor, 62, from Selborne, East London, drives the Amathole wing of the Down Syndrome Association.

Part of the job is supporting and encouraging the children but it starts with parents of the newborns who need to be embraced with love and care, she said.

Many are unemployed single mothers. 

The association works in Komani, Qonce, and areas in the predominantly rural east.

The main task initially is to educate families and new parents about the condition . 

Down Syndrome SA says the syndrome is a chromosomal disorder arising at the time of conception.

Trisomy 21, the extra number 21 chromosome causes delays in physical and intellectual development. 

Taylor said: “We co-ordinate home visits and skills workshops.

“It is a struggle, but a further issue is that once the children finish school there is nothing for these kids to do.

“So we held a cooking class and a workshop on health for the over-18s.

“These included Pilates on the beach, dance classes, beach clean-ups and Christmas parties.

Taylor said: “A friend had a child with Down syndrome which is why I joined the NPO. I do this for the pleasure and happiness on the faces of the children.”

Taylor said the organisation worked with two outreach co-ordinators who visit hospitals, among them Frere and Cecilia Makiwane to provide counselling and support to new parents, most of whom are single mothers. 

She said: “We give the new mommies support and educate them on early intervention.

“We also hold support meetings for over 400 families from the Amathole area, but because of the pandemic, we had to move to a WhatsApp group.

“But it’s been great for awareness.” 

The group has over 40 parents and a nurse from Cecilia Makiwane Hospital who share information, insights and events.

“A big challenge is schooling and education. Down syndrome classes are very small with long waiting lists.

“Some parents put their child’s name down when they are seven and they only get to attend at 11.”

Committee member Mimette Oosthuizen, 54, from Nahoon said she got involved with the organisation in 1999 after her daughter Tasha was born with Down syndrome.

Oosthuizen said: “We try to tackle the stigma surrounding Down syndrome.

“These are just kids who want to play and learn and they deserve love.

“We try to tell parents this is not a death sentence — there is still so much hope. 

“Every child has a special talent; we try to help, support and grow that talent with the parents.

“With parent support, we try to tell them not to hide their kids away.” 

Committee member Zimbini Kamana, 30, from Qonce, whose seven-year-old daughter has Down syndrome, called Taylor “an angel”. 

Kamana said: “Denise is so caring and understanding. I’m studying at the moment and every day she checks up on us.

“They have touched the lives of so many people. When you are told you have a child with Down syndrome and are scared, the group says ‘We are with you, we are there.’ Even if that means buying food with their own money.” 



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