Why the Down Syndrome Foundation is Being Launched

The Down Syndrome Association of Nigeria (DSAN) which has been the pioneer charity that takes care of people with Down Syndrome having been functioning since 2001 when it was established had to metamorphose to a Foundation in order to deal with the growing needs and challenges the association had been faced with over the years.

DSAN started out as a family support group whereby parents with children with DS came together to share their experiences and challenges encountered in bringing up their DS children which came in the form of family accusations and awful religious and traditional beliefs; stigmatization, health challenges the children exhibit and and also the need to know the best way of training them up to live a normal life.

Mrs. Rose Mordi, the founder and National President of the association, having gotten several trainings in the UK on trainingchildren with special needs coordinated these sessions but was soon saw the need to upgrade the family support group to an association.

As an association, DSAN had the objectives of taking the families with DS children through trainings on the importance of administering early intervention methods which helps in basically teaching the children to live independent lives as well as administer early education just as in bringing up normal children.

With the resource centre located at 109 Ogunlana Drive, the response of families with DS children became overwhelming that the association had to register with the Ministry of Education to have permission to run educational programmes for the children as well.

Along the line, the health challenges posed by some of the children who had heart defects, the association, in collaboration with the Kanu Heart Foundation (KHF) sent the first child to India for corrective heart surgery in 2004. After the successful surgery, the next set of DS children with heart defects arrived and before all the protocols could be done, two of the babies passed away. The deaths raised a serious challenge for the association.

The Resource centre at Ogunlana Drive kept increasing with more pupils and students that the two room apartment could not longer serve the number of students registered with the association; about 56 children were registered at that time but due to the space constraint, most of them who their parents wanted to stay in a boarding arrangement had to withdraw their wards though many of them were from indigent families.

In 2007, the Save a Life Project was re-launched when a 14 month old baby, Andrew Duku, came all the way from Bayelsa State to seek medical intervention as he was diagnosed with a hole in the heart. The association took the responsibility and raised the funds needs for the corrective heart surgery and Baby Andrew left the shores of the country in March 2008 and had a successful heart surgery at the Narayan Hrudayalaya Institute of Cardiac Sciences in Bangalore, India.

Baby Andrew’s success story became a catalyst that within a short time, Baby Victoria and Baby Josephine came calling. No sooner had DSAN arranged for their surgeries that for the first time, five babies came in for medical intervention. At this time, it was becoming almost herculean for the association to be functioning as a resource place where families come for advice and training on taking care of their DS children and wards and also delivering medical intervention.

Though there were corporate organisations that were partners with the association, the bulk of fund meant for the running of the association were used to give these children with heart defects a new lease on life. Also, the increase registered in the enrollment in the educational facility also needed attention.

It was then obvious that the association needed to move to the next level. Series of consultations were embarked upon with partners both within and outside the country and advice sought from other DS organisations that the association were affiliated to all over the world and the need of upgrading into a foundation was inevitable.

While these reasons mentioned were being looked at, the efforts of the association to establish resource centres in the six geo-political zones in Nigeria also came up; the association had successful established DS resource centres in Calabar in Cross River State; Abuja and was making efforts to start one in Kaduna but the resources needed to establish these centres were limited. The aim of establishing centres across the country became necessary when so may inquiries were been made from places far away from Lagos and also the increasing cases of DS children been born in Nigeria. Being the only charity that takes care specifically of people with DS, the challenge was enormous.

Another problem that faced the association was getting the students in the association who have passed through the educational institution to live a real independent life; it became necessary because so many of them had been with the association for years and the question of , “After here, what next?” arose.

The Planning Committee then approved the proposal to upgrade the association into a Foundation to firstly;

1. Run the Association effectively

2. Raise the Awareness of DS by establishing more resource and information centres

3. Deliver appropriate medical interventions

4. Provide adequate educational facilty for the children and people with DS

5. Make it possible for those that have passed through the educational institution to live an independent live after passing out.

The Down Syndrome Foundation Nigeria was therefore registered and have personalities like Chief Segun Olusola, Mr. Reuben Abati, Mr. Felix Awogu, Mr. Sonni Irabor, Dr. Tony Rapu, Mr. N.G Patel, and so on as members of the board of trustees.

Come 27th May 2010, the Foundation will be launched by Her, Excellency, Mrs. Abimbola Fashola, the First Lady of Lagos Statewho will also commission the new resource centre that can now boast of specialized equipments, boarding facilities and vocational training for the children in order to make them more useful to the society and lend their hand in the desired change the county needs.