No putting down children with Down Syndrome

By Ally Jamah

"I love watching Arsenal play on TV. It’s my favourite team!" gushes Ernest Waithaka his face bright and joyous.

Those around him, including his father Joseph Mwariri, smile back no doubt elated to hear him speak.

Waithaka, 24, suffers from a rare genetic condition, Down Syndrome, or DS as it’s commonly known.

He is of one of the 40,000 Kenyans living with condition that incapacitates its victims, leaving them struggling with speech and movement.

Eric Madete, wife Lydia and son Bradley, who was the inspiration for the formation of Down Syndrome Society of Kenya.

Tom Mokaya, whose mother has learnt to accept and support him

DSSK founder Madete. Photos: Jonah Onyango/Standard

About one in every 800 children in Kenya are born with DS.

Waithaka cannot pronounce words clearly, and he appears much younger than his age because the condition retards physical development.

In his schooling, he is years behind his healthy age-mates due to weakened mental capabilities.

Presently, he attends Our Lady of Mercy Akon Special School in Nairobi.

But Waithaka is among the lucky few who have families that care enough to take them through schooling and other life endeavours.

Why, the stigma surrounding DS means few, if at all, survive in societies where such children are considered an unnecessary burden because of their condition.

In 1968, American theologian Joseph Fletcher advocated immediate euthanasia for all infants born with DS. In a newspaper article, Fletcher explained that people with DS had "no meaningful quality of life, and so they should be put to death legally upon birth to protect society and individuals from the trauma.

In Kenya, many children born with DS are locked away from the people’s glare, lest they shame their parents and healthy siblings.

"We believe that thousands of people with DS are being hidden away in Kenya by parents who fear the social stigma associated with it," said Eric Madete, the Chairperson of the Down Syndrome Society of Kenya (DSSK)

Change of attitude

Through DSSK, Madete has been working hard since 2002 to change attitudes of parents with children born with DS.

"We teach parents to accept and love their children with DS. We show them how to raise them in the best manner possible," he added.

Madete should know. His first-born son, nine-year-old Bradley, was born with DS. Madete’s concerns for the welfare of his son are what gave birth to his organisation.

"I realised that there was no place parents whose children have DS could go for support and accurate information about DS. We decided to form a support group," Madete explained.

Mother’s confession

Parents with children with DS meet often to share their experiences and encourage each other under the auspices of DSSK.

"I used to feel the most unlucky mother when I got a child with DS. I used to ask God why He chose to give me such a child. But after meeting other parents with similar children, I have learnt to accept and love my boy," confesses Joyce Mogire, whose son, 15-year-old Tom Mokaya, has DS.

The message that DSSK seeks to reinforce is that many children with DS can live normal lives if their condition is diagnosed early and appropriate interventions put in place.

"If a child with DS receives speech therapy, as well as physiotherapy early enough, their capabilities tend to develop faster, improving their quality of life," Madete advises.

In the early 1980s, educators found that a stimulating programme of exercises and games could significantly spur development of muscle tone and the senses of touch, sight, and hearing in children with DS.

Faster rates of improvement were also noted in children with DS who lived within loving and supportive families.

While many people are quick to dismiss people with DS as "useless" and "incapable of any useful work", thousands of them are working successfully in various fields around the world and proving their sceptics wrong.

Meanwhile, DSSK is planning to set up the first school for children with DS, because most schools do not take care of their needs to enhance the children’s prospects.