To live with cerebral palsy, these children have to escape death

At 38 years old, Daniel Iornenge still battles with the effects of cerebral palsy that’s left him permanently disabled. Born with the condition, Iornenge has beaten odds considered almost impossible for children with cerebral palsy. He skipped through day care, maintained top positions in primary school with children he described as “normal”, went through college, […]

At 38 years old, Daniel Iornenge still battles with the effects of cerebral palsy that’s left him permanently disabled.

Born with the condition, Iornenge has beaten odds considered almost impossible for children with cerebral palsy. He skipped through day care, maintained top positions in primary school with children he described as “normal”, went through college, clinched a diploma in computer studies and a bachelor’s in special education and social studies.

Now he’s a missionary with the Fellowship of Christian Students in Benue state, but still has a limp in his arms and limbs and speaks with a speech impairment.

That’s despite years of supportive therapy through childhood and teenage years to help him cope, he says.

“Cerebral palsy is a challenging disability,” he tells Daily Trust. “Children with it need a lot of physiotherapy and speech therapy. But it is very costly in Nigeria.”

His advice is for government to employ more therapists or subsidise cost for their services on behalf of parents.

 

“Kill them, drown them”

The condition is the personal tragedy of families and their children living with cerebral palsy.

It results from underdevelopment or damage to parts of the brain—and impairment in functions controlled by the damaged or underdeveloped parts.

In 14 years of marriage, Kawan Aaondofa-Anjira had four children, two of them with cerebral palsy. Her daughter Seedo, born in 2005, couldn’t walk, see or talk. “I don’t think she knew me as a mother,” Aaondofa-Anjira.

A second daughter Aaondofa was born in 2007 and died at age eight, with the same condition, and her family knew little about it before.

“The advice we get around here is ‘kill them, drown them, they are not children, they are snakes incarnates, they are spirits,’” Aaondofa-Anjira recalls.

“For me they said it was because I did not kill Seedo—that’s why Aaondofa was born with a similar condition.”

Aaondofa-Anjira admits it was difficult from the start. “At a point, I said, why me? First child, then a second child? It wasn’t easy. We accepted them and began taking others in.

Since then, she’s started the Seedo Institute, named after her own daughter, to help parents understand what their children are born with, accept and love them.

“Weeping internally”

Seven children are at Seedo, living and cared for in the family apartment, but up to 50 other children are on a waiting list—cut out by Seedo’s keeping to the number of children Aaondofa-Anjira and her husband can support without outside assistance.

One of the children was Tersoo, given out to be killed for being born with cerebral palsy. His rescue was a daunting challenge, but he is the only Seedo child able to walk on his own, Aaondofa-Anjira recalls.

John Ekong, a horticulturist from Cross River, recalls his mother and elder sister, a pastor, told him to get rid of his son Miracle, born with cerebral palsy.

“‘You and your wife, where did you get this kind of thing from,’” Ekong recalls both women asking him. “‘It is not in our family line. You two know how you contracted it and how you are going to go about it.’”

Ekong is visually impaired and had to deal with a child with cerebral palsy. “Since then, my wife and I have been weeping internally,” he said.

His son is among the seven children at Seedo, but external support beyond the couple’s combined earnings is absent. Despite overtures to education authorities to raise attention about the children’s education, nothing is happening, they said.

“These children are human beings; they need support, support, support,” said Aaondofa-Anjira.

“So many parents out there who are killing their children, some of them are so poor they can hardly feed the ones that are able bodied, so how do you expect them to take care of children whose conditions they don’t understand? Government must support them.”

Even if only if physiotherapy and speech therapy, says Iornenge.