“I thought that the dreams I had for her were broken. But within time I realised that new dreams were possible, and that she has her own purpose in this life, other than what I envisioned for her,” says Hazel Mabaso from Umlazi, KwaZulu-Natal. Her 14-year-old daughter lives with Down syndrome.
Down Syndrome is an irreversible genetic disorder that occurs at conception, and is linked to maternal age. Ancella Ramjas, National Executive Director of Down Syndrome South Africa (DSSA) explains how chromosome mutations lead to the condition.
“This extra chromosome [number 21] alters the course of development both physically and cognitively. Unfortunately, there is no known cause, but an increased risk factor is the maternal age of mothers who are 25-years-old and above. The older the mother, the higher risk of having a baby with Down syndrome. It’s also important to note that due to higher fertility rates in younger women, 80% of babies born are born to younger mothers,” Ramjas says.
Ramjas adds that the incidence of Down syndrome in South Africa is 1-500 live births and cuts across race and class lines, but “there is no exact number of persons with Down syndrome in SA, and there is no standardised tool to collect this data.”
Education remains a challenge
When speaking to parents who have children with Down Syndrome, a common concern is finding schools that can accommodate children with this genetic condition. The fight for inclusive education in South Africa is on-going, with parents across the country advocating for their child’s right to education.
Another issue is that able-bodied children make fun of children with Down syndrome, or bad-mouth parents.
“When we’re in public my daughter would act out of character, and most people stare in amazement. Kids are most likely to stare, but I just shrug it off as them being kids. Besides, those things are normal to me now,” says Mabaso.
Growing pains, but community helps
Mabaso’s journey in caring for her daughter, Sinenhlanhla, has had its ups and downs, but she learnt how to adapt through the support and care from her community, and self-learning about the syndrome.
“It wasn’t easy, but with the support system of my partner, family, friends and church members — all went well and still is. Truthfully, I have learned to be more tolerant, patient, and have unconditional love in being her mother. Although I don’t attend any support groups, workshops or awareness groups, my family and I read up and research about Down Syndrome — and basically take it one day at a time,” she says.
At DSSA, Ramjas advocates for a holistic approach in caring for a person with Down syndrome.
“People with Down syndrome are also human beings, therefore, they should be considered as persons first and second, should be their condition. They should be addressed as persons with Down syndrome,” she says.
Mabaso adds: “Having a child with Down Syndrome is not a big deal, as long as you love your child unconditionally, accept the child as a gift from God and have a supportive family, friends and community.”
Ntombizodwa Sithole, from Kwanyuswa, is mother to a 6-year-old child with Down syndrome. Reading widely on the topic, connecting with other mothers in online support groups and visiting family friends who also have children with Down syndrome are some ways Sithole has coped with parenting a special needs child.
“People should understand that to have a child with Down syndrome is not a curse, but you need to accept this gift from God. That made it easier for me to raise my daughter, Hope. I told myself that after finding out, during pregnancy, that my child is going to have Down syndrome. And now I’m a happy mom, with a daughter who has brought joy into my life,” says Sithole.
Ramjas advises new parents to seek out support groups to learn more about their child’s condition, and assuage common fears or myths about Down syndrome.
“DSSA has associations and support groups throughout South Africa, where parents are able to link up to gain excess to their service,” says Ramjas.
One of these centres is located in Tzaneen, Limpopo, and was started by Difference Motseo, whose brother lives with Down syndrome. His dedication to his sibling and others in the region affected by Down syndrome led to the creation of Hiamukeleni Down Syndrome Outreach Centre, an information centre about the condition that also offers writing, reading and beading classes to people with Down syndrome. — Health-e News
To find out more about Down syndrome in South Africa visit the DSSA website or email firstname.lastname@example.org.