New resource centre opens for down syndrome children

By Chioma Obinna
Another Children’s Day had come and gone with fanfare but what impact has it had on the children particularly those with various forms of disabilities? Statistics available shows that these children represent 42 percent of the total population of the country and unfortunately 70 percent of them live below poverty line. These groups of the country are seen hawking on major highways across the nation under the very eyes of those who are supposed to protect them. They undergo rigorous activities to survive, unfortunately, many of these children are often abused in the process. Worse still, little or no attention is paid to a cross section of these children. Only two years ago, the United Nations found that 10 million Nigerian children are out of school. Critical observers are also worried that nothing is yet to be done about this situation. Unfortunately, with these children out of school and many more living with disabilities without early intervention to integrate them into the society, concerned Nigerians say the situation could be capable of endangering our democracy. More worrisome is that those who are supposed to reverse the trend are still paying lip service to issues concerning children. Although, 21 States have fully enacted child rights laws and another three have passed them but are awaiting their Governors’ assent, nothing is being done as it relates implementation of these rights. These rights, which include right to health, have been clearly outlined both in the convention on the rights of the child ratified by the Federal government in 1991 and the Child’s Rights Act 2003. However, many organisations had held parties and lectures to mark this Day. But one which is worthy of mentioning is the establishment of a resource centre for children with health conditions such as Down Syndrome and others. The Centre, located at the heart of Surulere Area of Lagos, was established by the Down Syndrome Association of Nigeria, DSAN. which has metamorphosed to Down Syndrome Foundation of Nigeria. The Centre, which was commissioned by the First Lady of Lagos State, Mrs. Abimbola Fashola on Children’s Day is specifically for both educational and medical intervention for children living with various disabilities, particularly Down Syndrome. The Centre, according to the officials of the Foundation would go a long way to demystify the genetic challenge which was synonymous with the derogatory terms such as imbecile, fools, idiots commonly used to describe persons with Down Syndrome or other forms of learning disability. The new resource centre, has specialised equipment, boarding facilities and vocational training for the children in order to make them more useful to the society and lend their hands in the desired change the county needs. During the commissioning Special Adviser to the Lagos State Governor on Youths and Social development, Dr. Dolapo Badru who reminded the audience the great task of dealing with conditions that are mostly attached to superstitious beliefs called for proper awareness of the condition as many of these children are locked up for life. Badru called on corporate organisations to invest more on the children adding that Corporate Social Responsibility (CSR) should not be seen as only taking some children off the street but think of those with various disabilities. “There is so much communication gaps between challenged and corporate organisations. many of them believe to put down there money in something that will get them something in return.” Speaking to Good Health Weekly, Founder of the Centre, Mrs. Rose Mordi who disclosed that Centre currently have about 56 out which 18 are residents said DSAN was metamorphosed to a Foundation in order to deal with the growing needs and challenges the association had been faced with over the years. Mordi further explained that the Centre 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; stigmatisation, health challenges the children exhibit and also the need to know the best way of training them up to live a normal life. “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 relaunch 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 funds meant for the running of the association were used to give these children with heart defects a new lease on life. “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 was affiliated to all over the world and the need of upgrading into a foundation was inevitable.” The Association has successfully established DS resource centres in Calabar in Cross River State; Abuja and is making effort to start one in Kaduna. “Being the only charity that takes care specifically of people with DS, the challenge was enormous.

Credit to Vanguard News Nigeria