Theresa Searle is the mother of a five-yearold boy called Rudy. After giving birth she went into heart failure and was placed in ICU for a few days.
Theresa Searle is the mother of a five-yearold boy called Rudy. After giving birth she went into heart failure and was placed in ICU for a few days.
But when the nurses brought her little bundle of joy to her, they brought some sad news too. Rudy showed all the symptoms associated with Down Syndrome. “People lack the compassion to deal with this,” says Theresa when she thinks back to the cold manner in which the nurses brought her the news of her son.
“The pain is not just emotional, it’s mental.” Searle is not the only parent in Grahamstown who has a child living with Down Syndrome.
Lisa Botha has recently opened a daycare centre. She has a two-month-old boy, Kyle, who has Down Syndrome and she believes that having other children around will stimulate him.
She could never send Kyle away to attend a ‘special’ school. “When the time comes, I will rather do homeschooling,” she says. But finding a suitable school for a child with Down Syndrome is a shared problem that mothers are faced with in Grahamstown.
This is why Botha decided to give up her job and look after Kyle herself, while running the Pitta Patta Daycare Centre for an extra income.
Rudy is now settled into a daycare centre, but Theresa fears for his future. Trying to get Rudy into a school has been problematic: either the schools are too full or they simply do not want to accept him.
“He cannot stay in a play school forever,” says Theresa. Living with a child who has Down Syndrome is not an easy task. They require extra attention and constant supervision, which are not always possible.
And of course there is constant fear that all mothers live with: how long will their child live? Searle and Botha both agree that this is the biggest challenge they live with.
A while back someone told Botha, “Do you know that your child is not going to live long?” This came as a shock to her as she realised there is nothing she can do to prepare herself to stand beside her child’s grave.
Searle believes “We need to do the best we can today and not tomorrow, because there might not be a tomorrow.” According to the National Institute of Child Health and Human Development the life expectancy of someone living with Down Syndrome has increased substantially over the years.
This is due to improved medical technology. In 1929 it was expected that a child diagnosed with Down Syndrome would only live for nine years.
Today, that age has increased to 50 and beyond. Ian Gow has being living with Down Syndrome for almost 39 years. Born in 1971 in Cape Town, He was diagnosed with Down Syndrome at birth.
At the age of three, Nova Lakin took Gow into her care and raised him. To this day she continues to love and care for him. In 1988 Gow and Lakin moved to Grahamstown.
This is now the place he calls home, and the place where he proves that it is possible to lead a normal and healthy life despite having Down Syndrome.
He works at Graeme College, cleaning up the grounds and helping out when the school hosts events. When asked if he gets paid for the work he does, his simple reply is: “I do it for love.” He is an avid supporter of the Graeme rugby first team and is a former learner himelf.
Gow attended Grade 1 in 2005, but when asked if he wants to progress to Grade 2, he declined the offer and stayed in Grade 1 for a further three years.
He loves singing, especially his favourite songs: Achy Breaky Heart and Love me tender. Church Services are a highlight in his week. He speaks passionately abouthis love for God.
“God is awesome,” he exclaims with a smile on his face. “God gave me this job.” When Gow is not out clearing the fields after sports events he is busy collecting ring pulls from used cooldrink tins.
Once he has collected a certain amount he will hand them over to Hospice so they can buy a wheelchair for a needy person.
After almost 39 years of life, Gow believes he will live “happily ever after”– just as happily as he has been living until now.
Dr Rudi Marx, a general practitioner in Grahamstown, describes Down Syndrome as a genetic abnormality.
The child is born with an extra chromosome at the 21st trisomy.
This affects the child’s mental capacity and the child will have slit eyes and a large tongue. Further effects on the body might be heart valve complications but this does not occur in every case.
Marx explains there are three different types of Down Syndrome: mosaicism, trisomy 21 and translocation. Marx says people with Down Syndrome have a very loving and caring nature.
Vanessa Dos Santos, the national director for Down Syndrome South Africa, explains that Down Syndrome is “not an illness, it is not a disease, it is therefore not contagious. It is a condition.”
According to Dos Santos, the biggest challenge facing people with Down Syndrome in their lives is “the stigmatisation of the condition”.
Down Syndrome South Africa is there to create awareness about the condition as well as provide information to the parents of children with Down Syndrome.
Dos Santos also advises that parents who have a child with Down Syndrome can apply for a care dependency grant if they meet the requirements and once the child turns 18.
