Five-year-old girl with Down’s Syndrome, stays indoors as she battles stigma

A five-year-old girl is in despair as she silently watches her peers play outside their homestead at Manyani Estate, Nakuru Town.

The girl, newly enrolled in school, suffers from Down Syndrome, a genetic disorder that causes an intellectual disability and developmental delays. The condition has made her lack speech. However, society seems not to be kind to the girl, and her condition has left her stigmatised and isolated, forcing her to stay inside their rental house, where she feels safer. Narrating her ordeal, her mother Grace told The Standard that most of the time, having the girl inside the house gives her peace of mind, as locals keep asking her about the condition, which she lacks answers to.

“I better have my daughter inside the house, than make her a laughing stock among other children and neighbours,” she says.  Medically, the disorder is caused when abnormal cell division results in extra genetic material from chromosome 21. The disorder may be associated with thyroid or heart disease.

According to statistics from the Down Syndrome Society of Kenya, many children born with the disorder are locked away from the people’s glare, to avert stigma.

However, children with the condition can lead normal lives if they are diagnosed early and appropriate interventions taken. Though the girl was born normal, the condition was diagnosed while attending cardiac heart check-ups.

Signs of the condition in children include a small head, bulging tongue, poor muscle tone, short neck, small ears and tendency of eyes to slant upwards among others.

Grace says her daughter had slow development; for example, she delayed to sit, crawl and walk. 

“Initially, I did not know why my daughter had slow growth, but I later learnt her development had been affected by the health condition,” she says.

Grace is among those sensitising the community on Down Syndrome to avert stigma, and ensure children born with such a condition get childhood immunisation.

She is a member of an organisation christened Tea 21, that has brought together at least 350 parents with children born with the condition.

“It is the wish of every parent to have a normal child. I decided to spearhead campaigns about Down Syndrome, to bring together children with the condition,” she says.

Amid Covid-19 pandemic, the mother is educating mothers of children with the condition to observe set public health guidelines.

To avert health complications that come with the condition, parents are also advised to attend clinic, and if impossible, adapt telemedicine with expert doctors for advice. “We encourage parents to attend medication, and limit interaction of their children as they risk contracting the disease by virtue of their immune system being compromised,” she says.