"So, you have one of these children?" How a Nigerian woman is raising a daughter with Down Syndrome

"So, you have one of these children?". In Nigeria, children with disabilities are considered an anathema, like a bad and unwelcome secret. So when a visiting friend asked Rose Mordi this question, she was not surprised. In fact, by this time she had become accustomed to the inappropriate stares and questions that came when people noticed her daughter, Awele.

 

Awele was born in 1987 with Down Syndrome. She is the youngest of Rose’s four children.

In Nigerian culture, some believe that children with Down Syndrome are a curse, or the result of some kind of punishment from the supernatural. For that reason, some people hide their children with disabilities. This was one thing Rose Mordi was determined her beautiful baby daughter would not be—a secret.

"From the word ‘go,’ Awele was accepted, loved, and well-integrated into the family," says Rose. "I would never go anywhere without her, except to work."

After getting over the initial shock of discovering her new baby had Down Syndrome, Rose went on to learn everything she could about the disorder. The plan was to give her child all the love her heart could muster.

"At that precise moment, I made up my mind that my daughter was going to be given the best start in life, whatever it would take. I decided Awele was going to be brought up just like her other siblings, so as to have a well-adjusted life. I made sure I read all the books, publications, and everything to do with bringing up a baby with disability."

For her, learning everything involved attending the International Down Syndrome convention every year. After the convention in 1998, Rose decided to set up her home as a sanctuary for other families with children with Down Syndrome in Nigeria—the first of its kind in West Africa.

But this decision did not come easily, as she was running her business full time. She was also nursing her husband, who had fallen into a diabetic coma after Awele was born and needed full-time home care.

Why did she add one more thing to her already-full plate? "It was when I saw the ignorance that was very prevalent in the country," she says. "There was a lot of stigmatisation—with people telling you things like, ‘We’re going to take you to see one church man who will carry out deliverance. Wicked people usually send these children. This isn’t the child God sent to you.’ So, I told my husband, ‘I have this strong urge to start a support group.’"

She ran the organisation of out of her living room for two years, providing counseling services to families and resources materials. She provided help to families who were struggling with everything that came with raising a child with Down Syndrome. She found it was easier for people to accept help from her because she was walking in those shoes with them. She emphasised to parents that children with Down Syndrome thrive on love, and families have to be hands-on.

Rose Mordi has made it her life’s mission to ensure that nobody will ever ask the parent of a child living with Down Syndrome: "So, you have one of these children?"

Source: by Atoke for one.org (ONE is an international, nonpartisan, non-profit, advocacy and campaigning organisation that fights extreme poverty and preventable disease.)