By Uche Okobi
“Many come and say, ‘Oh, one pastor has healing powers, they have seen genotype, HIV-positive results being reversed. Some know a Mallam somewhere who can drive out the demonic spirits in my child so that he can be normal.
“But I simply remind them of 2 Timothy 4:20, ‘Trophimus have I left at Miletum sick.’ This was Paul referring to a brother that was with him. This revealed to me that it is God who heals, not the man of God, not the Apostle Paul. And I know God. I commune with the Holy Spirit. Like the Centurion, I believe God has sent His Word and healed our infirmities.”
These are the words of Adel’s mother concerning negative attitudes towards her teenage son, who was born with Down syndrome.
Naturally, on Sunday, March 21, 2021, World Down Syndrome Day (WDSD), when some concerned Nigerians gathered to celebrate the annual event to create awareness about Down syndrome (DS) and issues relating to people living with the condition, inclusion and ending discrimination were some of the hot-button issues. Around the globe, every March 21, people with Down syndrome, family, friends, colleagues, support groups and communities come together to set agenda and advocate a better life for people with special needs.
This year, the theme was #Connect, to make the world “improve connections to ensure that all people with Down syndrome can connect and participate on an equal basis with others.”
In Nigeria, although activities are held in several locations to mark the day, there is still a lot of work to do to connect and change negative attitudes towards people with Down syndrome, including discrimination, stigmatization, abuse and, in many cases, the denial of the right to life. Even among the ‘educated and enlightened’, including medical doctors, many do not want anything to do with Down syndrome, some would say ‘God forbid,’ ‘abomination’ or ‘not my portion,’ and quickly move on.
However, “There is nothing down about persons living with Down syndrome. Focus on their abilities and you would be wowed!” says Temitope Adebayo, head teacher/vocational supervisor at Morainbow Down Syndrome Foundation, speaking on the radio programme Mindscope.
DS is a fact of life. It happens. Although no two people with this chromosomal defect are the same, it sometimes comes with medical issues such as heart defects, cognitive and growth delays, and dementia, among others. But those in the Down syndrome community aver that people with DS are angels that bring “blessings” and a rich life of wonderful experiences to people who connect with and accept them. Practically every person living with DS has won many battles not of their making to stay alive and they need all the love and support the world can give to reach their potential and attain greatness.
Consultant paediatrician, Dr. Oduero Olatunji, says DS is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome (three copies of 21 instead of two), which is also called Trisonomy 21: “This condition predisposes the sufferers to some physical and intellectual challenges, to the extent that, instead of 46 chromosomes, they have 47, with an extra chromosome, which manifests only when the child is born.”
He explains that doctors are not sure why this happens. There is no link to anything in the environment or anything the parents did or did not do. While DS affects people both physically and mentally, it is different for each person. And there is no telling early on what its impacts will be: “For some people, the effects are mild. They may hold jobs, have romantic relationships, and live mostly on their own. Others may have a range of health issues and need help taking care of themselves.
“No matter what symptoms a person with DS has, early treatment is key. With the right care to develop physical and mental skills, and treat medical issues, children with DS have a much better chance to reach their full abilities and live meaningful lives.”
Finding purpose in Morainbow
Tola Makinde, mother of three, gave up a highflying 11-year banking career to care for her daughter, Moyinoluwa, who was born with DS. She is the executive director of the Morainbow Down Syndrome Foundation, Lagos, which she founded out of concern for the upbringing of children with special needs, including her daughter.
Morainbow Down Syndrome Foundation has a mission to make “each day better than the last for persons with Down syndrome and their families,” to see an end to the “genocide, discrimination, and mistreatment of people with Down syndrome.”
With her daughter’s diagnosis in April 2011 and other challenges, she sought a unique environment for persons with disabilities. Passionate about helping and supporting them from birth based on her knowledge of early intervention from training by experts in the United States, she began weekly home visits to families in her community in 2014 and, with support from her husband, set up a centre in 2015.
Tola is a mobiliser who shares her story of finding purpose from pain to the public and mentors women in various communities, states and countries as she and her team work closely with international partners and mentors in various fields around the world. They create exciting programmes, self-advocacy, vocational training and job coaching for their special learners.
She has received various awards, including the prestigious Wise Women Life Turnaround Award, Eloy Humanitarian Award, SHE-E-O 2020 Star Award and was listed among the 100 Leading Ladies Africa 2020. She is an ambassador for Save Down Syndrome Inc. USA, among many laurels.
Her words: “I had prior knowledge of the challenges babies with DS may encounter in their early years. I was tired of everything, scared and afraid of leaving my job. My colleagues were shocked. It was actually a hard decision but I wanted to be there for Moyinoluwa 24/7 because every time I looked into her eyes, I saw the determination to thrive despite the diagnosis and heart disease.
“I cried a lot without letting her see my tears and I couldn’t imagine going back to work after maternity leave, leaving her for hours. It was a huge sacrifice and it felt like that was the right time for me to leave, as I was so vulnerable.
“Leaving a six-figure salary to an almost failed business was demoralizing. My business crashed the same year as I was selling off to get more money in 2011 for funds needed for heart surgery. In the end, I turned my pain into passion and purpose. What seemed like a messed up situation (a child you never bargained for; nobody shops around for disability) became a message.”
Tola says DS is not a taboo, it is not because the gods are angry with certain people, and parents should know they are not alone, they can get help.
Adel, rising son
Adel Ogidi is a winner. He has been winning since his first day. At 13, he is a model. He is also a drummer and plays the keyboard, among other talents.
His winsome smile, heart-warming laugh, flawless complexion and photogenic carriage make him a delight before the camera. Watching him strike a pose in Nigerian costumes, it is obvious his rise in the modelling world has begun.
Adel was also born with a heart defect and needed attention a few weeks after leaving hospital. He would not have made it except for his mother who left no stone unturned and ignored doctors’ ‘expert advice’; a doctor in Abuja told her the echo scan report showed that Adel had a small ventricular septal defect (VSD) that was “insignificant” and he would outgrow it.
She was not taking it; her fair-skinned ‘oyinbo’ baby was turning blue, and gasping for air, and passing out intermittently. They were going to India for surgery, she insisted, and the doctor said, “Well, you have dollars to waste.”
The doctors in India “simply discarded the scan report from Nigeria. Several scans were done by each of the five doctors. There were two nurses watching him every second of the day. The lead paediatric cardiac surgeon told us that the scan showed the VSD all right, but it also found a large patent doctus arteriosus. They did not even see that in Abuja.”
Fortune smiled on Adel and the surgery was successful. That was one of the first battles he won.
For something that was not his fault, he has contended with getting sound education amid rejection from several schools, discrimination from strangers and hostility even from some church folks. And he is still rising.
How do you care for a child this special?
Caring for children with DS is hard. It is one of the reasons some families give up on them. Because they reach growth milestones slower than other children, and they are often in and out of hospital in the first few years, a lot of unwarranted negativism is weaved around DS, blotting out the bright future that awaits those who persevere.
Some mothers take on the care of their child on a full-time basis. Others employ trusted caregivers or enroll them in centres for children with special needs.
Looking back, Adel’s mother says it has been the grace of God and a strong support system that have seen her child succeed this far. She has raised a young man aware of his rights and potentialities, beyond his disabilities, such that he is stepping out to seek endorsements and contracts as a model, an advocate of inclusion around the world.
Until Adel was three and a half years old, his mother took him along on all trips, both personal and official, in and out of Nigeria. “His flight ticket was paid for and the hotels were told to make a cradle available. So, Adel is well travelled and has aunts and uncles all over the world. He also got many toys, which he still keeps. Travelling gave him a lot of exposure. He learnt a lot, including how to use elevators and select the floor before he could walk. The sights and sounds of the travels and outdoors are brain simulators. And getting some sunshine on his skin was good for vitamin D. It helped his immunity.”
She is strongly against locking up a child with Down syndrome because of shame or as a way of dealing with stigma and discrimination. “It denies the child facets of life that keep him healthy and help with socialization.”
According to the president of the Down Syndrome Support Group of Nigeria, Dr. Philips Orhue, the best way to manage children with DS is to prioritise early medical intervention, education, vocational training and early social integration. Orhue says, if these are not put together, the child might not be able to live independently, because the condition predisposes them to medical challenges.
The care team may include primary care physicians to monitor growth, development, medical concerns and provide vaccinations; medical subspecialists, depending on the needs of the patient (for example, cardiologist, endocrinologist, geneticist, hearing and eye specialists); and speech therapist, to improve the ability to communicate.
It takes a superwoman
Adel’s mother, Cesnabmihilo Dorothy Nuhu-Aken’Ova, is a linguist, feminist and sexual and reproductive rights activist, from Diko, Niger State. She lives in Minna, the state capital.
She is a born-again Christian, a breast cancer survivor, an Ashoka Fellow, recipient of the Berlin Stonewall Award for Resistance and winner of the Trailblazer Award of Freedom 2019, with experience in the NGO sector for over two decades, building awareness and advocacy on a number of issues.
She says: “I have zero tolerance for stigma and discrimination. Everyone who has been around us knows that Adel is loved and respected and I don’t hold back where there is need to correct someone who has treated Adel without respect.
“I have taken a very influential school to court in the past for discriminating against Adel. I have never dropped him in children’s section in the church. He sits beside me. I do not want to hear story-story. I simply make Adel my priority and that gives me a good level to play from in relationships with other people, work, and life generally. I am glad his older brothers understand and are just as supportive and protective of him as I am.”
On the challenges, she says they are “mostly to do with the lack of support from government in Nigeria, unlike in more advanced countries where government takes charge of their needs and provides a care provider, if needed, or the family gets financial allocation to cater for the child, if they choose to do so by themselves. At least, a parent will not do any other job. That becomes like an employment for the parent who becomes the caregiver.”
So how does she handle discrimination? “Discriminating against Adel or rejecting him means rejecting me. Discrimination happens even in the least expected places. A school owned by a reputable Pentecostal church refused to admit Adel twice, at the primary school and the secondary school.” She has always wanted her child to be in mainstream schools and get along like every other human being. “But God opens doors that will take us to where His grace abounds. He also shuts doors to where we will not be covered in His grace. Adel was admitted in one of the best primary schools in Minna, where the teachers and pupils took him as their own. Now, Adel is in a school where the principal says their motto is, ‘Accept, love, and respect all children.’
“The heroic welcome of his classmates in these two schools blots out all the instances of stigma and discrimination and rejection we face daily.”
Reaching for the stars
Parents of children with DS are sometimes surprised by their abilities. In spite of their faith in their wards, they still marvel at the intelligence and intuition of the children, which at times border on extra-sensory perception. The children do things that show they are gifted in diverse ways.
Adel’s mom says he really wants to be a model. So, using the #Adelshimi social media platform, she says: “The #Adelshimi project is dedicated to exploring opportunities and resources to nurture and promote Adel’s character and talents by challenging preconceived notions that children born with Down syndrome or other forms of disabilities are unable to function effectively in society.
“Our goal goes beyond Adel’s ability to earn but to the point where he can give back to his community, support other children with special needs and advocate for the rights of children born with Down syndrome in Nigeria and the African region. It has been a steady upward and forward climb.”
Adel, she says, is able to read moods. “When he observes that one is looking down, or if he sees that one is injured, he goes over to the person and says, sorry. He sometimes wakes up in the middle of the night, lays his hand on my head and prays for me, sometimes in the Holy Ghost.
“Adel is sweet and has that childlike innocence about him. He does not take what has not been given to him and he doesn’t know how to cheat or lie. Indeed, to such belongs the kingdom of God.”
Mrs. Makinde sums it up this way; Her daughter, Moyinoluwa (@moballerina), is “Simply beautiful, unstoppable and determined. She never lets anything stand in her way. She cares for people around her and wants to add value to her world.
“All these qualities are unique and important for one to live life to the fullest.”