Emily Illman hugs me as I arrive at her house and leads me inside to see her dance-themed bedroom – which is as neat as a pin, for Emily is super-tidy.
The 14-year-old is friendly, confident and proud of the attention she is getting. She has Down Syndrome (DS) and for the purposes of this interview, she is the star of the show.
We sit in the garden to chat to her family – parents Tracey and Andrew and her sister Hannah, 19 – who form a loving support system for the teenager.
DS is a condition caused by an error of cell division at conception that results in an extra 21st chromosome, causing delays in physical growth, characteristic facial features and mild to moderate intellectual disability. This family is a shining example of this year’s theme for World Down Syndrome Day (March 21, 2015) – the role of the family.
On the 21st anniversary of the International Year of the Family, Down Syndrome International has chosen to focus on this theme and the positive contribution that families can make towards full and equal rights for people with DS.
“Emily is part of our family and part of the community,” says her mother Tracey. “She goes where we go and we believe it is important for children with DS to be seen and be part of society. There needs to be acceptance and comprehension of these people and that can only come through education and contact.”
Tracey has done talks at mainstream schools, taking Emily along and explaining how DS occurs and how people live with the syndrome. Emily knows she has DS and beams as we talk about it.
Many DS children have a sunny disposition, says Tracey, and this is true of Emily too. She loves unconditionally, has no prejudice, no agenda, is not malicious and she smiles a lot.
But, she is mentally challenged and life is not always easy. She can get frustrated when people don’t understand what she is saying and she can be stubborn.
“She may be 14, but she has the mental age of a much younger child and we have to make allowances for that.”
Tracey and her husband Andrew say that having a DS child has its challenges and they encourage parents of affected children to make contact with the Down Syndrome Association (DSA) for information and support.
“Shortly after she was born and we found out that she had DS, we were very stressed,” says Andrew.
“We knew nothing about it and we didn’t know what lay ahead. The internet was not as widely used, so we did not have that source of information. But making contact with DSA was a big help.”
Tracey says finding out about Emily’s condition after her birth was a shock. She had not had an antenatal test for DS and there was no family history of the syndrome. In fact, the type of DS that Emily has – trisomy 21 – is not hereditary.
“I cried for five days,” she says. “I mourned the child I didn’t have – and it is normal to do that.
“The turning point came when I contacted DSA and spoke to the mother of a DS child, who was so reassuring that I felt a lot better. I made friends with a mom whose child was six months younger than Emily and we were a huge support to each other.”
As the older sister, Hannah, a B Com student, is protective towards Emily.
“When I was younger, I didn’t realise she was different,” says Hannah. “She was very cute and people warmed to her.
“At the age of about 10, I became aware of people’s stares and an awkwardness when they would meet her.
“Children sometimes say cruel things and I would get angry and confront them when they passed an unkind comment. I have always been very protective towards her.”
Emily attends a home school, which has children with and without remedial needs, and she is doing Grade 2 work. Tracey says they are not afraid of the future and want Emily to get sheltered employment when she is an adult.
“Sometimes your worst fear can turn out to be your greatest joy. We have been so enriched by having Emily in our family,” she says.
Caroline Willis, branch manager for DSA KZN stresses the importance of family support.
“Families raising children with DS experience the same joys and challenges experienced by all parents.
“The presence of a child with DS should not have any negative effect on the other siblings and interaction between them should be encouraged.
“Any baby can cause crisis situations in a family. Because the child has DS doesn’t mean that that is the reason.
“In some rural areas discrimination is still evident due to communities being uninformed about DS but over the past few years, public awareness has increased in these areas and people are being more accepting.”
She says people with DS thrive on being members of the community. “By taking their children to all functions – shopping, cinema, church, etc – families educate the community that people with DS can function and become a part of activities the same as everyone else.”
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Syndrome facts
* The incidence of Down Syndrome (DS) in South Africa is 1-650 live births annually.
* The average age of a woman giving birth to a baby with DS is 28.
* DS happens at conception. It is not anybody’s fault and the cause is unknown. It is not related to race, religion or socio-economic status. There is no cure.
* There are three types of DS, the most common being trisomy 21, which is not hereditary. About 92 percent of people with DS are trisomy 21.
* People with DS benefit from loving homes, appropriate medical care, early interventions, educational and vocational services.
* DS is not an illness. People do not “suffer” from DS nor are they “victims” of it.
* Advances in medical and developmental interventions, together with an improving perception of DS in society, have resulted in many people attaining personal goals undreamed of before. The average life expectancy of people with DS is 70.
* People who have DS vary in intellectual and physical ability, as do all people. They have the same dreams, rights, feelings and aspirations.
* They should be regarded as unique individuals and not be stereotyped.
Information from Down Syndrome South Africa: the KZN branch can be reached at 031 464 2055 or [email protected]. Visit www.downsyndrome. org.za.