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Down’s syndrome won’t pin us down

Despite having Down’s syndrome, 24-year-old Ingrid Wanjikuis determined to make something out of her life by making mats. And as we mark World Down Syndrome Day tomorrow, her mother, Lillian Kinyanjui shares her experience raising and nurturing her special child

Sandra Wekesa and Grace Angela       

Ingrid Wanjiku crochets her mats with passion. With so much love for the art, she is keen not to miss out on any single step. One strand after the other, she does it with so much vigour. Impatient on how the mat will turn out, she looks at the previous ones that she already worked on. She goes on and on and when she gets quarter way, she looks at her mother, Lillian Kinyanjui, and utters some incoherent words.

Ingrid is Lilian’s only child, and the only person who keeps her going during her low moments. Though Ingrid suffers from Down’s syndrome, Lilian loves and cares for her.

Just like any mother, when Lillian gave birth to her bundle of joy 24 years ago, she was overcome with joy. “Before I gave birth, I didn’t have intrinsic ability to determine my child’s health status, I only hoped for the best and prayed everything would turn out okay,” says Lillian.

Delayed milestones

After delivery, she noted her daughter had slanted eyes, a flat back of the head, broad hands with short fingers, and a wide space between the first and second toes. Her sixth sense alerted her all was not well. “I just wished whateve it was, it wouldn’t entail surgeries. I waited for the doctors to explain the condition. At last, the diagnosis came— her child suffered from Down’s syndrome also known as Trisomy 21,” says Lillian.

However, doctors did not give her an explanation of what was ailing her child and that left her more confused. Not knowing how else to address the issue, she spent most of her time gathering information and learning what exactly the condition was all about from other parents.

The most challenging part was helping her daughter cope with the condition. “Ingrid had delayed milestones. At the age of three, she wasn’t able to walk. Even after letting her spend some time with other children, she didn’t improve. I later on decided to take her for therapy, which turned out to be too expensive for me. One session would cost Sh500. She needed to attend therapy everyday,” says Lillian.

And Ingrid wouldn’t learn in usual schools. “My child had been to five schools, and she didn’t fit in any of them.  All had issues with her and stigmatised her. So I decided to take her to a local polytechnic where she could learn how to crochet mats,” the single mother reveals.

Now, Ingrid makes mats on order. One goes for Sh2,500. And it is this skill that has kept the family going. Down’s syndrome occurs in the general population worldwide at one in every 700 to 1,000 births. It is estimated that 45,000 people in Kenya are living with the condition.

Many parents who have children with Down’s syndrome are often faced with various challenges nurturing them through various stages of life.

It is through this experience that made parents with affected children to set up Down’s syndrome Society of Kenya (DSSK) in 2004, which provides support to children with the genetic disorder.

According to DSSK chairman, Erick Madete, the organisation not only offers support to children, but also to the families stigmatised by the society.

The children are equipped with practical skills through various workshops since their ability to grasp these skills are at a high level, especially when they are repetitive.

Not different

“We are advocating for the government to put measures in place to ensure that people with Down’s syndrome live a full life because most of the time they are discriminated against,” says Erick.

DSSK has also started working with the Judiciary in terms of educating courts on intellectual disabilities. He adds that these children have a right in matters inheritance. He dismissed the notion that people with Down’s syndrome cannot handle property matters just because they cannot express themselves fully.

Recently, DSSK published a newborn manual to help parents have a better understanding of the condition and get to accept their children. “We are creating awareness because these children are not different. It is only that their development is slow,” says, Erick.

Celebrating their achievements, the organisation has seen the children with the condition rise to shine in various aspects of their lives. “We have those who play musical instruments, farmers, chefs, special Olympic swimmers and kindergarten assistants,” says Erick.

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