Hope Rises for People with Down Syndrome as Foundation is Launched

It was double celebration for people with Down Syndrome on Children’s Day Celebration last week as they marked the launching of the Down Syndrome Foundation Nigeria (DSFN)and also had their new resource centre commissioned.

During the event which held at the Foundations resource centre located at Adegoke Street in Surulere, Lagos State, the First Lady of Lagos State, Her Excellency, Mrs. Abimbola Fashola   extolled the dedication and determination of initiators of the Down Syndrome Foundation Nigeria, notwithstanding the enormous difficulties caregivers to children afflicted with such challenges pose. Speaking at the event,  Mrs.Fashola, who was represented by her Senior  Special Assistant, Mr.Biodun Ogunyade, said she will be willing to assist the Foundation, to ensure the Children are properly catered for.

“ She asked me to say thank you, thank you, for a job well done,” he said and also  on Corporate Nigeria, and other well meaning Persons to show concern and support for the Children and the Foundation.

He went on to announce that   Ministry has concluded plans start a TV show, a Social Welfare Hour, to showcase the works of charities that help special people and promised that children with Down syndrome  and the activities of the Foundation will be given priority. He urged the larger society to show love and care to kids, who are so challenged, rather than stigmatizing and discriminating against them.

President and Founder of the Down Syndrome Foundation, Mrs. Rose Mordi has stressed the need for Parents with  DS condition children  not to regard it as a curse as the children could be helped to live a fruitful and productive life if given the necessary assistance. Mordi made the call as the members of the Board of Trustees of the foundation were inducted.    Speaking to journalists, Mordi urged parents with children with the Down syndrome not to stigmatize or discriminate against them but should rather seek help.

“I have a child born with this condition- a young lady of 23 years old. And I realized that in Nigeria, there is not much information about the condition, and you know that any thing that is not well known, people become superstitious about, so I decided to create awareness, by gathering a few parents together, and we started as a parent support group. From there we got involved in helping the children,” she said.

On what causes Down syndrome,  Mordi  explained that the condition is a genetic imbalance.

‘Down syndrome is a genetic disorder- that happens at conception. A child born with Down syndrome (DS) has an extra chromosome. You and I have the regular number of chromosomes in our cells- that is 46; we get 23 a piece from both parents but a child who is to be born with Down syndrome has an extra chromosome which we refer to as an accident of birth. It is not due to anything the mother did, or didn’t do, or the father did or didn’t do .It is spontaneous thing that happens, it is the 47th chromosomes, as against, the forty-six they should  and that extra chromosome is what   predisposes a child to this condition,” she explained.

She decried the practice where families with a DS child would rather want to lock the child up than seek for assistance in administering early intervention. She informed that one of the challenges facing the foundation was the non-challant attitude of the general society.

“Because, as it not a very flamboyant project, a lot of people don’t want to even partner with us, to help these children. The main problem, we experience is the nonchalant attitude of the larger society –to help these children and their family. We have a lot of children we need to support, medically and educationally, but we haven’t got the wherewithal to do that. And, we don’t have much support, and it has been a very big challenge to us,” she said.

Similarly, a Trustee of the Foundation, and Nigeria’s former Ambassador to Ethiopia, Ambassador Segun Olusola,  called on well meaning  Nigerians who have job openings in their establishment not to hesitate to engage, and help children with this condition as they up, in order to give a sense of belonging, that they are wanted, that they have things they can do to help other peopled.

Ruben Abati, also a Trustee of the Foundation, frowned at the attitude of government at all levels toward the welfare of the Nigerian child. The social crusader and the Editorail Board Chairman of the Guardian Newspaper frowned at what he described as the government paying lip service to helping the Nigeria child.

“Governments at all levels pay lip service to doing something for the Nigerian Child. But in reality not enough is done, not real commitment is shown, and what is done is nothing but mere lip service. It is not all about children who have Down syndrome; it is about children generally, in difficult circumstances. Children represent the future of this country. The population of Nigeria is predominately young. And our constitution says, nobody, should be discriminated against, either on the basis of religion or circumstance of birth, faith or for any reason whatsoever. For Government to neglect children in difficult circumstances, amounts to an abuse or a violation of their basic human right,” he said.

However, he gave a pat on the back for Her Excellency, for showing interest the activities of the DS Foundation.

“It gladdens my heart, that, today, we have Government representation, the Lagos State people, the Office of the First Lady of Lagos, and they were well represented. And, the appeal we will be making is that another government should show interest in what the DS Foundation is doing.

What the DS Foundation has been able to achieve is quite impressive. I think, it is a Foundation that deserves the support of government and also, of all a sundry. We run a society, whereby, the privileged do not seem to be public spirited, where the privileged seem to be interested only in conspicuous consumption, and continuous amassing of wealth.

Those chaps in the National Assembly, who are collecting millions of money per quarter. The House of Representative members, they are not even satisfied with 27. 2 million per quarter, which I think, it case of being over paid for doing nothing. They say, they now want about 50 million per quarter. Now, the question you ask is what they do with this money. I would like to see a situation, whereby the privileged in the Nigerian society, does not spend his wealth, either acquired illegally or legitimately, simply on showing of on endless patties, but feel concerned about the plight of other human persons’

The Children entertained the guests and audience with songs and dance. Their performance was so thrilling that Ambassador Segun Olusola has this to say, ‘I thank you for the performance of the kids. When, it comes to the issues, idea, a play, a song, dance, invite me, I will come and be with them.”

My Story – Rose Mordi & DSAN

“I was in my late thirties when I had my daughter, Awele Maria Mordi on 29^th July 1987; it was not an easy pregnancy for me. I was given all sorts of reasons why I could be feeling the way I did during the pregnancy. I was told it could be a boy or maybe I was carrying twins.”

Like she had feared that all was not well, she asked to see her baby when she regained consciousness. But she was not allowed to see the baby until the fourth day, and when she did, she became hysterical.
“They eventually brought my baby to me on the fourth day. I was having my siesta when they brought her and when I woke up and saw her, I screamed. I knew immediately that she had Down syndrome. I was familiar with the condition because in my previous ante-natal classes abroad, we had been taught about all these abnormalities. I called the attention of the nurse and she tried to reassure me that the baby was okay but I was not convinced.

Later on, they said they were going to carry out tests to determine the type of DS she had. (There are three types of DS – Trisomy 21, Mosaic and Translocation); the hospital also promised to get a physiotherapist to work on her neck which was very weak. Nothing was ever done by the hospital. In order to take care of the baby, I had to take a long leave of absence from work. It was during that period that I got in touch with the Down’s syndrome Association in the UK. I was given some counseling and resources. My daughter is the better for it today because I was able to do something early”.

In order to take care of her daughter, Awele, properly, she had to be constantly in touch with the UK DSA. Later on, she was advised to start a similar organisation in Nigeria to help families because there were lots of enquiries coming from Nigeria. She eventually did that  and the association was formally inaugurated on the 4th of December, 2001. She says the association started with a handful of parent members in her sitting room. The association has about 300 registered members with over 30 children coming in regularly.

She reveals that the establishment of the association became necessary because no such association previously existed in the whole of West Africa. The only one in Africa is in South Africa. She says that parents with children with the condition need to come out to learn how to manage their children’s condition. She also says that our society needs to be educated and awareness programme carried out to eliminate the stigma attached to the condition; such stigmatization is unnecessary and unjustified because these children thrive well on love and constructive affection.

“I recall that when I had my baby, people who saw her made all sorts of uncomplimentary remarks and suggestions. There is this belief that children with D.S. are snakes or demons and should be thrown away into a forest or a stream. I remember someone saying, ‘So you have this kind of baby; they are snakes!’ I just responded that if God in His infinite wisdom deemed it fit to give me a snake for a child, then I will take care of her as all living things were created by God. Such superstition is still rife because just a couple of years ago my sister’s friend nearly succumbed to it. She was asked to go and throw her DS baby in the stream. It was my sister who prevailed on her and enlightened her that her baby was not evil but a precious gift from God.”

Mrs. Mordi however, admits that running the association has been quite challenging; the greatest challenge has been funding. Being a charity, members are not expected to pay for services being rendered but costs are incurred on a daily basis to run the Resource centre.

“We render a number of services and we have various professionals employed to do this effectively. We have the Early Intervention programme (EIP), which is designed to ‘catch them young’, so that the condition is easier to manage as they grow older. Given their condition, they are predisposed to some other ailments. About 60-70% of people with DS have a heart condition that is why many of them die early. Diabetes, thyroid problems, Alzheimer’s and a generally low immune system are conditions associated with people born with DS. Thus they constantly require medical attention and we try to do that at the centre. We have volunteer medical professionals coming in to carry out checks but when there is need for major medical procedures, we find ourselves unable to handle such because of lack of funds.

“Due to their learning disability, we have professionals in that area. We carry out programmes on numeracy, literacy and vocational training. The programme is very much similar to the Montessori system whereby teaching each child is individually tailored towards the ability of the child. At this moment, we are unable to carry out effectively all the programme because we are constrained by space, structures and funds. It costs us approx. =N=600,000 monthly to run the centre. Most of our members are indigent; they cannot afford to pay for the services we render. We need a bus to convey the children because some of them cannot even afford transport money to come to the center.

Our aim is to see that children with DS are adequately taken care of so that they can develop their potentials optimally and be integrated into the society. My vision for the association is to have  proper structures in the six geo-political regions of Nigeria, which will incorporate a medical unit, a school/vocational centre, recreational/residential quarters and other necessary facilities.”

Talking about her own experience, Mrs Mordi says she has coped fairly well because of the knowledge that she has acquired over time about the condition. “My daughter got integrated into the family quite early and was brought up like her other sibling. She is fairly independent as she does everything by herself and is quite assertive. She cooks fairly well and is does shopping independently. She travels without a chaperone.”

Mrs Mordi advises other parents to bring their children out as they are capable of achieving a lot. In the developed countries, many of them are computer wizards and very talented , particularly in the arts. “A number of people with DS work at the UK DSA office and other parts of the developed countries. Thus the society needs to give them a chance to express themselves and fulfill their potentials.”
Mrs. Mordi also says that the association is a membership organization and anyone can join  as it is not restricted to families of people with DS. The association needs a lot of volunteers, supporters, patrons and people who wish to give scholarship to our indigent members.

People born with Down syndrome are predisposed to various medical conditions that require early intervention. In a country like Nigeria where provision of primary health care is almost non-existent, our association (in conjunction with our partners), aims to put up a functional medical unit  this year to take care of minor medical  needs of people with Down syndrome and other learning disabilities. In 2007, our association was able to sponsor two of our children to India for corrective heart surgery. This year, we intend to sponsor about three of the children on our waiting list for similar surgery overseas and also construct a well equipped resource centre with residential facilities.

Everyone can be of help by donating, volunteering or supporting the work of the association in one way or the other. The association has a functional website (www.dsanigeria.org/ email:info@dsanigeria.org). Donations could be made on-line or sent directly to the head office in Lagos.

A Blessing in Disguise! – Composed for David Akerele By Elsie Rose Akerele

My Angel Has down Syndrome

Yes! His Birth, unusual; his growth, unique;

His make, different.

At first a challenge, and later a task,

And then a mission.

My Angel Has Down Syndrome

I needed the grace, he needed the love.

His siblings were aware of the work on ground.

Their input is beyond what money could buy.

They needed to extend their unconditional acceptance

To the new arrival in the home of ours.

My Angel Has Down Syndrome

I learnt to make him my angel, my friend,

My companion and my closest acquaintance.

And I got the shock I never bargained for.

The way my Angel responded to training,

He yielded to love,

He embraced my friendship,

He was encouraged to learn some skills,

He dances like bees and drums better than the drummer boy,

He sings like birds and his laugh infectious.

My Angel Has Down Syndrome

And soon, my Angel was noticed by all and sundry

He began to be loved by the neighbours and authorities

His gifts and skills have made room for him.

He stands before kings and acts before princes.

To the priests, he is just the friend they want.

My Angel is humorous and so compassionate.

Is that a gift or also a skill?

You should know where I’m coming from!

We became friends and the best for sure.

My Angel Has Down Syndrome

Wherever he goes, I’m always invited

If he sees the kings, I’m seen kings

If he is beamed in the media, I am always accomplished.

We compliment each other in our great assignment.

My Angel Has Down Syndrome

His credentials include story telling,

Children supervision and interceding for people.

David my Angel, the weak has been made strong,

The Fool has become wise, the poor has become rich.

And today this scripture is here fulfilled:

“That all things work together for good to them that love God

And are called according to his purpose.”

My Resolve

I’ll love the more to gain twice as much

My mission in life is right on course.

My Angel is the catalyst of who I am,

And a great aid to where I am.

With David, I have learnt my lessons aright,

And place my priorities right as well.

When I’m left with the weak,

The Lord supplies the strength I need.

When I stay with the fool,

The Lord remains my wisdom.

When my portion is with the despised,

Christ remains my lifter.

My Angel has brought me from obscurity to limelight,

A royalty I never bargained for.

I share fame and glory with him;

I enjoy privileges with him.

He is now one of the greatest treasures

I have found in life.

He’s given my life a meaning

The greatest things God has done for me.

Who is Your Angel?

Locate him and the Lord will turn your pains to gains.

My angel has DOWN SYNDROME ;

Ayo Omotade visits DSAN

The first time I heard about the man called Ayo Omotade, I admired his courage; for standing up to restore the dignity of his fellow human being was not only courageous but religious considering the Parable of the Good Samaritan. Read more

Baby Victoria Ajayi Undergoes Successful Corrective Heart Surgery

by Ahaoma Kanu

Some hours after more than one billion people worldwide witnessed the historic swearing in of the 44th and first African-American President of the United States of America (U.S.A), Barrack Obama, a group known as the Down Syndrome Association of Nigeria (DSAN) kept vigil at night offering prayers and supplication to the same God not for the new President who had ten balls to attend thousands of miles in Washington, they were spiritually clearing the way for one of their babies who left the shores of the country to have her defective heart corrected. Read more

Organization of awareness campaigns

Down Syndrome Association of Nigeria since 2002 has sucessfully organised awareness campaigns to educate members of the society about our cause and use this as a meduim to reach out to those who are vunerable. Our awareness week usually takes place in the month of September. We thank all those who have played or contributed to make them a sucess so far; the journey is a long one and we admonish you to support us in any way you can.

Fund raising for baby Andrew Duku

We have organised fund raisers to help the less priviledged children in esperate need of medical attention. One of our fundraisers was that of BABY ANDREW DUKU who needed an emergency heart operation; we were able to raise $6141 (N720,000) with the support of members of the world community ; wehad help from the online forums community, home and abroad, media houses and members of the general public; you can also support us in future fund raisers.