Rose Mordi, national president, Down Syndrome Foundation of Nigeria, in an interview with Anayo Ezugwu, staff writer, Realnews, speaks about people with down syndrome, why they should not be stigimatised and why Nigeria should pass the bill on disbility which has been lying prostrate for 16 years
Realnews: What motivated you to establish this Down Syndrome foundation?
Mordi: I’m a parent of a young lady who was born with down syndrome and that is what informed my starting this foundation in Nigeria about 17 years ago as a group. My last child who has this condition is 30 years this year. When I came back from Britain and I found out that there was so much ignorance about the condition and stigmatisation in the country I decided to gather a few parents together, a few parents who were bold enough to come out. Because of this stigma a lot of people hide these children away.
So we started it as a support group, helping the parents, giving them advice and respite service because a lot of these parents found out that nobody wants to help them out with the children. So they are stock with the children more or less 24 hours a day because their lives cannot move forward also. The respite service I was given was to keep the children with me while they go to work for themselves. Then there was a need for us to get a centre to train the children. We have been moving from one level to the other and now we have come to this level of being a foundation.
Realnews: Apart from the respite services, what other work does the foundation do for the children?
Mordi: The foundation takes care of the children in four different areas: early medical intervention, early educational intervention, early social integration and advocacy. So far we have been able to help hundreds of families all over the country. We have a hostel for them and the reason for the hostel is to help train them holistically, in independent living and then make it easier for parents to have time to attend to other issues. Since we started the foundation the children have done us proud. One of our children is internationally known. That is Solomon. He was a lead actor in a Super Story, television drama series. He is also a special Olympian. He went to the US to play basketball and came back with a silver medal.
He is an all rounder, he is a dancer, a singer, a model and he is a chef. Like I said I’m proud to see that we have been able to change the lives of a lot these children and the mindset of the society in our own little way. We haven’t got there yet because there is still a lot of stigmatisation and ignorance.
Realnews: What are the major stigmatisations these children always face?
Mordi: The major stigmatisation is the fact that people feel that these children are either demons or that the parents did something and that is why these children are born this way. This is why we are creating awareness to let them know that these children are just like the rest of us. It is not an illness. So they are not suffering from this condition because of any wrong doing but they are born with extra chromosome.
Let me break it down for you, human beings are products of the male and female cells fusing together to form a human being. We have trillions of cells in our body and the cells are made up of what we call chromosomes. And chromosomes are the blueprint of who we will grow up to be. For example, we always hear people say that you have a facial feature of his father or the nose like that of the mother among others. At conception when the male reproductive cell which contains 23 chromosomes meets with the female reproductive cell which also should contain 23 chromosomes, when they fuse together that initial fetus should have 46 chromosomes.
But something happens and researches are still ongoing because even after years of experiment, scientists have still not been able to know where that extra chromosome came from. Whether it is from the father or the mother but that could happen continuously to anybody. it is like somebody being born with an extra finger, instead of five you have six.
Still on the parents, when pairing, an extra chromosome comes out making it three instead of two, that initial fetus now end up having 47 chromosomes as against 46 the rest of us have. So it is that single extra chromosome that predisposes them to this condition called Down syndrome. That was why in the past they used to call them Mongos because they have the features of the Mongoians. They have features like slanting eyes, small ears, round face, large tongue and so on. But if you look at each child especially those with slant eyes you will see the features and that was as a result of that extra chromosome. But then they will still look like their families. If you look carefully you will see the resemblance.
Realnews: What are the challenges you are facing in running this foundation?
Mordi: They are millions. Financial challenges to take care of their needs. Children born with down syndrome are predisposed to what they call hole in the heart. It is in the general population but we have more among them. For some reason we don’t know why. Nearly 50 percent of every child born with down syndrome is predisposed to having hole in the heart that is why most of them die very young.
They are as healthy as you and I but because their medical needs have not been addressed that is why they die. That is why they need early medical and educational interventions to correct some of the medical issues they might be predisposed to. And the fact that there is still a lot of stigmatisation, ignorance and for us running this place is an uphill task. It is very demanding because you don’t have any support from the government, either state or federal.
It is groups and people like the Nnamdi Azikiwe University Alumni Lagos Chapter that supports us to take care of these children. Most of these children come from very indigent families that cannot afford to take care of themselves talk-less of these children. And they also still have the mentality that even if they have the money why should I spend it on them and of what use will the child be. We are now trying to educate them and train the children so that they will be well equip to take care of themselves in future
Realnews: What does it take someone to enrol his/her child here?
Mordi: It doesn’t take anything. You just bring the child but then what we do is that we insist that the parents at least pay something to show that they love this child. Then we now look for scholarship to take care of the running cost because it takes a much disciplinary team to take care of them, medically, educationally and socially. And of course, the teachers need to be paid.
Realnews: In the last 17 years you have been running this, how many children have you graduated?
Mordi: We have only graduated five because we really started structuring the school to graduate them just a couple of years back. Before we were just training them but we felt we need to graduate them so that we could encourage the society to employ them. Before we were just thinking of making them to be useful to the family and the society but there is need to graduate them.
What we intend doing is every year we graduate at least five of them. The number might increase but it also takes a lot to train them to the level of getting them graduated. Like Solomon, he is one of our graduants. He is working at the centre.
Realnews: Presently, how many students do you have?
Mordi: We have a lot but here in Lagos because of space constraint, we have 36 in the hostel and about nine or 10 that comes from home because they cannot sleep around here. But we have centres in Ibadan and Benin and we are hoping to establish different other centres to take care of families who live far away and cannot afford to bring their children here.
Realnews: Is down syndrome hereditary?
Mordi: Actually there are three types of down syndrome: the first one is called Trisomy 21. Ninety-five percent of all Down syndrome cases have that. The second one is called Mosaic. This means that some cells in the body might have the regular 46 chromosomes and if it is in the brain cell they might do very well but the features might be there. Then the small one which is one percent is called Translocation. This is the only one that could be hereditary.
Let me use the example of Albinism. Albinism can be in a family and could be dormant. You could see both parents very dark and then they have an Albino, which means somebody in the family had it and it was there dormant. In down syndrome one percent could be hereditary. It could be somebody along the family line had down syndrome and then the thing could just replicate after a while. But generally majority of down syndrome cases are not hereditary.
Realnews: December 3, the world celebrated International Disability Day, what do you have to say to government and other local and international organisations in Nigeria?
Mordi: As we observe the international day for people living with disability I’m telling the government especially the federal government, please sign the Disability Bill into law. We have been on the bill in the last 16 years and each President that comes in push it behind and leave it there without signing. Right now it has been harmonised by the National Assembly but the Commander in Chief has still not sign it into law. Unless a law is put in place it will be difficult to take up people with disability because everybody thinks that they don’t matter and therefore nothing is done for them. And for people out there, please don’t discriminate because disability comes in many forms. Disability is something you can be born with or it could come before birth, during birth, after birth or even in the old age. It could happen to anybody so you should not discriminate. Try to reach out to accept them. I’m also appealing to the society to help those who are trying to put things into place. And families out there don’t feel stigmatised. Don’t feel that you owe the society any apologies for having a child with disability because nobody can create life. Do what you can for this child don’t hide them away or abandon them because God didn’t make a mistake in sending every human being to this world. Do what you can to accept and love that child and give the child the best you can.
– Dec 8, 2017 @ 19:03 GMT |