Rebecca Ejifoma writes that Mary Special Needs Foundation, a charity organisation founded by Mrs. Adedoyi Oseni for people with special needs, is bent on nurturing positive receptiveness towards persons with special needs, with special focus on epilepsy. In her quest to change the narrative, her book on “Epilepsy Guide” bridges the information gap between the specialist in the field and the common man on the streets
“Caring has the gift”, an age long saying goes, “of making the ordinary special”. This is the true picture of Mary Special Needs Foundation (MSNF) whose mission is to create awareness on issues and conditions that affect people with learning disability or epilepsy.
MSNF was formed out of the dire desire to nurture positive receptiveness towards persons with special needs, especially epilepsy, and to also cater to their needs.
Today, MSNF is a home to children and adults with special needs in Lagos State and Nigeria. This is all thanks to a mother’s undying love after her second son developed epilepsy at age one.
Established in 2013 with seven board members to its name, Mrs. Adedoyi Oseni is piloting the affairs of the NGO. She is a mother, Chartered Accountant, fellow of the Institute of Chartered Accountant, MBA from the University of Ife, and holds a Diploma in Adult Social Care from England and Wales. Most imperatively, she has the experience and the knowledge, and she is certified.
Birth of the Foundation
In a nostalgic mood, Oseni reminisced about her life before and after the foundation came to being despite her background in Accounting.
With her imposing certificates in different fields and her enviable position with the Lagos State government, Oseni narrated how she jettisoned all just to care for her second son, the brain behind the foundation and child with special needs.
“The journey started with my son. My son is a treasure child. I suffered secondary infertility. I had him six years after the first child. My husband is a bit more elderly than I, so there was anxiety to have another baby after the first one,” says the founder.
When in 1993 she finally had her second baby six years after the first, this mother of two was elated. “It was a joy to behold but I didn’t know I had gestational diabetes because I am very slim. Unfortunately, we had diabetes running in the family.
“When I had him, he was 4.6kg while I was about 55kg. He suffered asphyxia (when a child is deprived of oxygen) when I was having him. He was very big and that caused delay in pushing but we didn’t know.”
Sadly, that fateful evening in 1994 changed the lives of the Oseni’s for ever. While juggling motherhood and career, she was returning home from work with her son who just celebrated his first birthday.
She recounted: “I was returning home from work. There was heavy rainfall and standstill in traffic. When I got home, I noticed something was different about him as he lay on the bed.”
Oseni, alongside her mother, took her baby to the hospital. They visited about five hospitals. “He twitched and jerked from about 7.30pm until 2am when he came around. We were told he had febrile convulsion.”
Subsequently, her baby started having seizures. “We took him to LUTH. We took him everywhere just to make sure that he is fine, but this thing kept on going.”
When the family of Oseni could not find the soothing succor they longed desperately for, they left Nigeria for England.
“We thought of what to do since we were not getting the kind of succour we were looking for and we were not getting it in Nigeria. We had to move to England,” she added.
Determined to give her son a better and normal life, Oseni the went through different workshops in England. She made herself available to unlimited information about epilepsy, did some training programmes and also worked in environment of people with special needs. This was all for her son.
Indeed, life in England as a mother and carer exposed the chattered accountant on ultimate help for her son and others with special needs.
“It really exposed me on how to help and support him even with the father. We went about to see how to help him. One day, when I was in one of the facilities, I felt so suicidal that I should kill my son and kill myself to end all the problems,” she lamented.
For the mother of two, her current status had dethroned her. “It brought me so low. I lost my self-esteem. I lost everything in terms of emotion. I’m a Chartered Accountant by profession. I hold a very good position in Lagos State but then found myself working in that kind of environment because for me to understand him I had to work in the care setting.”
Change in Mindset
Her down moments went on until 2009 when her focus altered. Motherhood brought compassion out of her. “I saw a lot of things happening to him which I could not explain”.
Oseni sat, thought and concluded on her next move after a still small voice whispered to her. “But I heard it clearly that I have not sent you to come and work in this environment.”
“How do you help me? If you are going through this you can imagine what is happening to them back home in Nigeria. it was at that very moment my focus changed. That was in 2009 after having my baby in 1993.”
Being kindhearted, Oseni could not wish any mother or father same daily trauma and distabilised health she and her husband, Mr. Oseni, put up with.
She admitted, “I am not a carer,” while declaring, “I still retain who I am. All I’m looking at now is how do I help other people, how do I understand my child. Whatever I do to help my child then I can transfer it to other people.
“From there, when I went to the facility to work, I told my manager, a Ghanaian – Lucy Ampafo – that I wanted to replicate what we did in the house in Nigeria. She also said she wanted to do same in Ghana”.
Henceforth, whenever Oseni’s manager wanted to do something she would call her to come and have a look. “She knows more about it and knew that I was different from people working in the environment.”
The concerned mother dived into the system fully. “Lucy started exposing me to a lot of trainings that would help me to build understanding and a portfolio to do the same in Nigeria. With all that exposure I was able to help my son. Today, he is seizure free for over four years now though he had some traumatic experience. He is really doing well in England.”
As whey vowed to do, she returned to Nigeria to replicate all. Although it may take a while, Oseni expressed how robust the welfare package is in England. “England has a lot of robust support for people with special needs,” even though her son’s needs are not really profound.
She counts the commendable package, “They have robust care welfare package for them. They go to special school, they support them, they have a budget, they ensure their needs are catered for, social budget, employment support allowance and medical is free.
“They have got a lot of things to use to support people with special needs. If you are named someone with special needs, every of your need will be catered for: carers and it is going to be 24/7,” said the CEO.
When the MSNF boss was going to England, she sought for medical leave from the government since she was in employment with Lagos State. “When the medical lapsed, I had to return to Nigeria. My husband supports him in England. When I came back to Lagos State, I was posted to Ministry of Education as the Financial Director.”
Oseni joined the permanent secretary on a tour to Modupe Cole facility, a care home and educational facility that houses about 430 residents.
“When we got there on the visit from the ministry, all the residents clustered outside, because I know what operates abroad and what I had seen in the environment. I knew it was a case of misinformation for the managers, which we will call institutional abuse; a lot of things were lacking,” she bemoaned.
But because she didn’t have the authority and wherewithal to change what was happening to those people in that facility, Oseni could not do anything. “We went further inside the facility. There is a big plot of land in front of the dormitory of the residence.”
When the CEO saw the state of Module Cole, she wept. “The place is an abandoned environment with thick bush, abandoned vehicles, sticky and swampy,” she described.
She gave an anecdote of the site. “This is the part they took to their dormitory. You could see them falling from their wheelchairs. It was highly inhabitable. While with the team, the spirit said, ‘This is what I’m talking about. What can you do for me here?’ This was in 2015.”
Just like many others, passion and idea trickled in, but the wherewithal was her only setback.
Hence, Oseni soliloquised, “I asked myself where I will get the money to do this. The first thing I did was to get the approval from the Lagos State government. A lot of people didn’t know I was the one doing the project. It took about two years before the approval finally came”.
Swiftly on the heels of the approval, “What we first did was to remove all the abandoned vehicles. We cleared it. There was a project that schools should be rehabilitated. They were pouring debris into the site.
She recounted, “We returned there in March 2020. We built the recreational park for them with support from families and friends and a corporate organisation that gave us N400,000. Altogether, we may have spent about N10 million to do this. While we were working, five of the residents had (seizure) epilepsy. I had to call in the nurses, who took time to come.”
Need for Awareness
For Mary Special Needs Foundation, its mission is to raise awareness on issues and conditions that affect people with learning disability. Its vision is to nurture positive receptiveness towards persons having special needs through our outreach to ward off all generational myths.
There is a need for awareness to increase, hence, Oseni started the projects on September 19, 2019. “We decided to print the information guide with the publication of the book since we may not be able to reach everyone.”
“We now came up with the objective on epilepsy. Our aim of writing the book is to bridge the information gap between the specialist in the field and the common man on the streets,” she listed, as she said it is also to reduce or prevent sudden death in epilepsy.
“This is because when any of these people suffering from these conditions have a crisis people will run away from them,” she speaks on.
In the charitable words of Oseni, people don’t know how to manage epileptic people because of the myths that have shrouded this condition.
She recalled, “Look at the case of Dr. Orji that plunged into Third Mainland in 2017, it was because of the stigma and depression he suffered from this ailment. He was not allowed to do his exam like the others were doing.
“The seizure probably was uncontrolled and the environment does not understand how to support him. He got depressed and jumped into the lagoon. He was a good potential who could have maximised what comes out of him but for the stigma.”
Since MSNF took off the ground last August, they have been to Redeemed, Wave Academy and brought out surveys to teachers in five special schools in Lagos. “We visited hospitals to meet sufferers and know what they are going through as outreach”.
MSNF is using social media platforms like Instagram to talk about the book, Guide on Epilepsy, its treatment and types.
Citing statistics, Oseni said every one in five persons with learning disability will have epilepsy. “Most of these care homes will have at least one person,” the founder said.
Accordingly, Oseni expounded, “When we say someone has special needs it means he has got some impoverishment. Some have physical, visual, intellectual and mental impoverishment. People with learning disability is people with intellectual disability.
“The levels vary. Because of innovation and the way things are changing, people with learning disability are no more called learning disability, in developed world they call them special needs because they have specific needs that should be taken care of.”
She estimated that one in five people with disability will have epilepsy, which means about 20 per cent of people with learning disability will have epilepsy. “Epilepsy is something that is not age bound. It can affect anyone at any time. When the public is aware and is conscious, one is guided against it.”
The one that is rampant, says Oseni, is people with stroke. “If you have high blood pressure and you are not checking your blood pressure because you think you are young you cannot have it and you have a mini stroke, you are likely to suffer neurological problems. Once that happens then you have end up having epileptic seizure.”
Providing Better Lives for Epileptic Persons
Now, for people with special needs to live better and healthy lives “last year, the disability act was established by the president Muhammadu Buhari. Earlier this year, they commissioned a body, the disability commission which has about five representatives from each zone to bring up things used in supporting people with disability”.
With this establishment of the commission and the establishment of the act for people with disability, Oseni said that, “if we benchmark against the best practices of what is happening in developed world we bring it to bear in terms of social welfare I’m sure there will be a huge change with people with special needs”.
Through MSNF, Oseni and her team members are making a passionate call for sponsors to get the books on Epilepsy across the country. This is in its ultimate quest to effect a generational change in terms of the way people perceive epilepsy, to be able to remove, to a great extent, the myths about epilepsy and let the public know that they can support people with epilepsy.