Hope Rises for People with Down Syndrome as Foundation is Launched

Children at the launching of the Down Syndrome Foundation of Nigeria (DSFN)

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.”

Why the Down Syndrome Foundation is Being Launched

Down Syndrome Foundation Nigeria – Invitation to the commissioning of our new resource c

DSAN Celebrates World Down Syndrome Day

The Down Syndrome Association of Nigeria (DSAN), a registered charity and the only organization established within the country and the West African sub-region to cater for people with Down Syndrome, announces the World Down Syndrome Day which comes up on March 21st 2010 will be celebrated in Nigeria just as it is being held all over the world.

World Down Syndrome Day (WDSD) is usually celebrated on 21 March with Down syndrome organizations throughout the world organizing and participating in events to raise public awareness of Down syndrome.

The date which was selected by Down Syndrome International (DSI) to signify the uniqueness of Down syndrome in the triplication (Trisomy) of the 21st chromosome and is used synonymously with Down syndrome.

According to the National President of the Association’, Mrs. Rose Mordi, special activities has been lined up for the day and this will be flagged off by a special thanksgiving ceremony at Redeemed Christian Church of God (Jubilee Christian Centre, 15 William Street, Aguda, Surulere,Lagos) after  which an awareness rally will commence from the Down Syndrome Association of Nigeria Headquarters situated at 43 Adegoke Street, Surulere, Lagos State.

The Awareness rally will proceed to the Lagos State Government House where the wife of the State Governor of Lagos State, Her Excellency, Mrs. Abimbola Fashola will host people with Down Syndrome to an evening of discussions and   to create awareness of the condition in the country.

The association will also use the celebration to inform of the programs it plans to hold tentatively over the next few months in order to create awareness as well as advocate for people with Down Syndrome in Nigeria .

Some of the events include the commissioning of the Down Syndrome Foundation of Nigeria which will take place on the 27th of May 2010; a one day special musical concert that would feature notable artistes in the country billed for the 3rd of July 2010 while the Annual Down Syndrome Awareness Week will commence on the 2nd of October with a Charity Walk; A seminar on the 6th of October while the Awards Dinner evening will take place on the 8th of October 2010.  The Annual Family Funfair which brings families, friends and partners of people with DS is expected to be held on the 9th of October 2010.

Also, there would be introduction of so many others events our PR firm, Meljenstin Public Relations and events Consultants will come up with this year.

The National President wishes to inform our numerous partners and support groups that through their support, the association has been able to relocate from the former resource centre located at 109 Ogunlana Drive , Surulere to 43 Adegoke Street also in the same vicinity, where renovation works is still going on. The association wishes to use this opportunity to appeal to corporate organizations, religious bodies and individuals to project.

The association also wishes to inform the general public especially those with DS children of the introduction of boarding facilities in the educational centre operated by the association and urges families to enlist their children or wards to be adequately taken care of by the specialized staff at the centre.

The association would also like to announce that it would be honoured in the Special Recognition Category of the National Daily Awards as the best Non Governmental Organization for the year 2009 by the National Daily Newspapers.  In a letter dated March 8, 2010, the Managing Director and Editor-In-Chief of the National Daily Newspaper, Mr. Sylvester Egbodaghe noted that the association was being honoured for their “unquantifiable contributions towards those whom ordinarily members of the society would not want to have anything to do with.”“You stuck out your neck and embraced the unembraceable, showing them love and extra ordinary care in the midst of a selfish and careless world. You gave hope by giving off your own humanity,” the letter read.

The Award ceremony   would hold   26th of March, 2010 at the Lagoon Restaurant, Victoria Island, Lagos and is to be chaired by the former Secretary-General of the Commonwealth, Chief Emeka Anyaoku while Prof Jerry Gana, former Minister of Information is expected to give a keynote lecture.

The association wishes to dedicate the award to all its partners.

Visit our website at www.dsanigeria.org for more information or call our Media and Publicity Department on 080-3748-7286: Email: ahaoma@dsanigeria.org

About The Down Syndrome Association of Nigeria

Who are we?

Down syndrome Association of Nigeria is a non-governmental, not-for-profit association of children with Down syndrome as well as their parents, caregivers, and other interested stakeholders.

History

Down syndrome association of Nigeria was formed (founded) on 4th of December, 2001 by a parent of a child with Down syndrome. Societal attitude toward parents of people with Down syndrome is totally negative in the Nigerian society. Society defines them by what they do not have rather than what they have; what they cannot do rather than what they can do; they are relegated, denigrated and stigmatised on the basis of some retrogressive myth and tradition They are abused physically and sexually with impunity and in extreme cases; even their right to life itself is denied them.

It is against this rather harrowing and ugly backdrop that Down Syndrome Association of Nigeria evolved with a vowed commitment to bridge the gap between children/adults with Down syndrome and the rest of the society through a support system that seeks ultimately to integrate them. This commitment is rooted in the firm belief that if given the necessary encouragement and enabling environment to grow like others, people with

Down syndrome can and do actualise their potentials and live a fulfilled life. In a vast country like Nigeria , as well as in the entire West African coast, with a combined population of well over 230 million, we are the known non-governmental organization working to provide leadership in all areas of concern as it relates to persons with Down syndrome. It should be noted that charity/volunteer work in our part of the world could be most challenging and frustrating, especially as there is very insignificant, if any, support (both morally/financially) from the Government and corporate concern

Mission Statement

Vision – Our vision is a world where all young people with Down syndrome are offered the opportunities that they need to achieve their individual potential. Mission – Our mission is to improve the opportunities offered to young people with Down syndrome. We do this by discovering their potential and by identifying how to support their personal development most effectively through scientific research. We then communicate evidence-based information and guidance through publishing, training and consultancy services to families and professionals worldwide. Through scientific research and global communication, we transform the lives of people with Down syndrome everywhere.

Our services

Educational

We give special educational Early Intervention Programme (E.I.P). This is meant to cater for each child’s immediate and unique learning needs and facilitate the child’s developmental milestone. However, before this is done, an assessment test is carried out on the child to diagnose his/her intellectual deficits and medical problems. Our in-house Educational psychologist and medical Doctors in the Down syndrome Association secretariat do this assessment at 109, Ogunlana Drive Surulere, Lagos . As soon as these educational and medical assessments have been done, the child’s medical needs will be ascertained and the modalities for treatment and therapy will be made known to the parents/guardian. Similarly, the result of the educational assessment will reveal the child’s strengths and weakness, and an individualized curriculum Programme is planned for the child; this Programme is unique in the sense that, it is tailored specifically towards the learning needs of each child as all children are not equal, each has his/her own learning needs.

The educational Programme curriculum covers the following areas

1) Literacy Development (Reading & Writing skills)

2) Numeracy skills (Numbers and Calculation)

3) Communication & Language (Speech development)

4) Social Development

5) Vocational skills

6) Perceptive skills

Social Services

Relocation Programme for street boys and girls with Down syndrome

Enlightenment/Interactive services on Down syndrome through media/work shop/seminars

Help line Telephone service and House-to-House emergency respite, Sensitisation and Advocacy/Pressure group to the government, legal services and memoranda to government officials involved with health and educational Programmes at local, state and federal levels.

Regular enlightenment and interactive service on Down syndrome through the media (print and electronic), workshops/seminars.

Through the above mediums Down syndrome Association of Nigeria give information to people about the condition-Down syndrome and the best management strategies. Since Down’s syndrome and learning disabilities is a societal problem as a result of the negative stigma associated with it, we educate and de-stigmatise the society from such negativism.

Sensitisation and advocacy/pressure group to the government including legal services and memoranda to government. The association paid one of such visits to the national assembly (senate). It has also visited the 1st lady of the Lagos State government. Several letters and memoranda are sent on a daily basis to various corporate organization government organs and well meaning personality giving them awareness about this condition Down syndrome and the need why parents who have these children should bring them out for proper care and education.

We also give telephone help-line service and house-to-house emergency respite for people with Down syndrome.

Rehabilitation Services

This department functions under the educational Programme of the Down syndrome Association. The following services are offered:

Training centre and resettlement support for people with Down syndrome

Resource centre which includes Toys and educational library

Mainstreaming and integration school Programme for people with Down syndrome.

Counselling Services

Parents of children/wards with Down syndrome, as well as siblings need a lot of counselling. The Down Syndrome Association of Nigeria has a host of professional counsellors who offer counselling services.

The following lines are for counselling:

234-1-8119718,08032285545 or email counselling@dsanigeria.org.

Referral Services

Down syndrome Association of Nigeria officials and members of the Board of Trustees meet regularly to review the activities of the association.During these meetings, all other committees meet to review Programme of the Association and assess the success and challenges of the various Programmes undertaken by the association during the year.

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 ;