Kogi first lady speaks on raising a son living with cerebral palsy

Amina Bello, first lady of Kogi state, has called for love and empathy from the public towards children with cerebral palsy (CP) and other persons with disabilities (PWDs).

Bello made the appeal to mark the world cerebral palsy day while speaking in an with Osasu Igbinedion on The Osasu Show.

Cerebral palsy is a neurological disorder caused by non-progressive brain injury. It is a malformation that occurs during pregnancy while the child’s brain is still developing. It primarily affects body movement and muscle coordination.

With the exception of children born with a severe case, CP is considered to be a non-life threatening condition. Most children born with CP are expected to live well into adulthood.

The world CP day is celebrated every October 7. It is a social movement to celebrate and affirm the lives of 17m people worldwide living with the condition.

Bello, who has a son, Hayatullah, living with CP, narrated her experience in dealing with the stigma from the society and obtaining good healthcare for her child.

She founded an organisation named after her son, Hayat foundation, to create awareness and sensitisation on CP and to help children with the disorder and other PWDs.

She called for a bridge in the gap between normal children and children with special needs, especially in the education sector.

“The inspiration behind my foundation has to do with my journey in raising my son Hayyatullah Onoruoiza Bello who was born with cerebral palsy and the challenges thereof,” she said.

“Even though we advocate people with cerebral palsy, we also advocate people with special needs in general which also encompasses the disabled community.

“You will notice that our mainstream public and private schools tend to segregate among the children and for us at Hayat foundation, we feel it is not the way to go.

“If children are leaders of tomorrow, it is important to have special and regular children in the same environment and this fosters unity, empathy within them.

“Regular kids if they find themselves in the position of power tomorrow, they will keep on making laws and the society much more friendly and accepting to the special needs community in general.”

She listed provision of learning materials and drilling of borehole and relief materials as part of the contribution of the foundation to the community.  This she said will “show that something good does come out from the special needs community to able bodied men and women.”

“We have visited some special needs home still in the suburb because the challenge is that nobody wants to go there and when you visit these homes you see some of he children in appalling state. It is important that here in Nigeria, we begin to embrace these children because they are part and parcel of us.

“Our foundation is a pan-African initiative. We never intended to create it for just Kogi state or Nigeria. We are working with his excellency’s blueprint team and we ensure that every proposed building that is going to be renovated at one time or another are all wheelchair accessible.

“We have been advocating that all schools and public institutions including churches and mosques are wheelchair accessible.

“In as much as I believe that there are some cases that need exorcism, in most cases, some of these challenges are medically induced and we have to begin to manage and treat them accordingly.

She noted that the country lacked the necessary equipment and technical-know-how to provide adequate care and early intervention for the cerebral palsied.

“It doesn’t affect their sense of reasoning. Like my son is a very happy person. He loves to laugh, play and he loves animals. Most of them love plants and nature and music,” she said.

“When you talk to them, they hear, understand and comprehend everything you say. The only challenge is that they may not be able to respond as swiftly as you want them to or respond at all.

“These are the reason we advocate early intervention, so that with regular physiotherapy, speech therapy, they keep on improving as they grow older.

“Raising a special child is not easy. But I was fortunate enough to have families that were very supportive.

“My family, particularly my husband really helped in dealing with that stigma. He supported me in every way possible-physically, spiritually, financially, he was always there.

“We had to travel round the world because we didn’t fit in. We felt odd. We kept on moving from one country to another to seek solution.

“Eventually, we went to America and there I kind of found closure because there we were able to to find all forms of equipment even customized to suit his age bracket.

“Back home, we couldn’t even get wheelchair for him because all were for adults. But I felt we could not all run away from our country. Home is home.

“If we really want to fix Nigeria, someone has to start it and I felt I had found my calling and there was no better place to be than to come back home.”

She said the foundation which will be launched on October 13, is working towards building schools, a world class library with materials that are tailored to suit their individual needs and hospital facility for children with CP.

She also said the foundation was working on sponsoring the bill on non discrimination against children with disabilities, adding that “when there is an enabling law in place, it will be easier for parents to seek redress on the event that their rights are trampled upon.”

She added that the child rights act has been passed by the state governor and some parts of the act will tackle some of the challenges.