Those who have come in contact with Mrs Rose Mordi will surely attest to her love for children with down syndrome.
Mordi is the National President, Down Syndrome Foundation Nigeria and also the Chairperson of the African Down Syndrome Network.
Her resilience in caring for children with down syndrome is not in doubt as she sees it as a divine mandate.
Her passion to provide all persons with down syndrome in Nigeria with opportunities to contribute to the community and live valued lives has remained unwavering since she established DSFN some 18 years ago from her sweat and purse.
Mordi is a goal-getter. This special feature she brought into the Foundation which has benefited over 2,000 children with down syndrome and their parents .
The British-trained business administrator, who has devoted her life to demystifying the myths and misconception around down syndrome, is also a board member of the Lagos State Office of Disability Affairs.
Sharing her life experience with The Point, Mordi , who is the last child in a family of four, said she was well-pampered by her parents. Her father, being a teacher, made sure that they all had good education. She finished her primary and secondary school education in Nigeria and went abroad for her tertiary education. She studied Business Administration in the United Kingdom. After her tertiary education, Mordi began her career at the Nigerian High Commission in London where she met her late husband. Both later returned to Nigeria and settled in Lagos.
According to her, their return to Nigeria was to enable their children know their root and culture, though the children went back to the UK after their secondary education.
Narrating her child bearing experience, she said, “I had three of my older children in the UK and the last one in Nigeria. In the UK, everything is available when it to comes to health. They have good health facilities and experts. During antenatal , you are properly checked and educated on all you need to know about your baby before and after delivery. So, giving birth there does not come with stress as we have in Nigeria. In the UK, the government takes care of you and your baby by paying you an allowance. Honestly, there is no basis for comparison between what operates in Nigeria and the UK . “
However, Mordi gave birth to her last child in Nigeria, who incidentally, was born with down syndrome.
Rather than wallowing in self pity , Mordi happily welcomed her daughter after which she embarked on a journey to find succour and support for children with down syndrome in Nigeria so that they can be well integrated into the society.
This journey, though tough, however, brought out the heart of gold in this woman of substance, who despite all odds, established the DSFN to demystify the condition still unknown in Nigeria and the rest of African region.
The DSFN was established over 18 years ago primarily to care for children with down syndrome in four core areas namely; Medical, Educational, Vocational and Social Integration.
This woman of substance gives a vivid account of what led her into sacrificing all she had, including all the opportunities beckoning on her in the UK, to caring for children with down syndrome in Nigeria and Africa.
“Some years after we returned to Nigeria, I had my last child and daughter here in Nigeria. And she was born with down syndrome. Her birth was what informed the establishment of DSFN.
“What actually happened was that, when I gave birth to her, I found out that little or nothing was known about down syndrome in Nigeria. At that time, there were a lot of superstition surrounding the condition. More so that nobody wanted to talk about it nor try to find out what it is. I remember that when I had my daughter, they brought her to me and the features I saw on her made me know she had down syndrome.
“The reason I got to know she had down syndrome even before the medical personnel that supervised the delivery was the knowledge I got in the UK during antenatal clinics of my older children. When I had my first child in the UK, during antenatal clinics, they discussed extensively everything about abnormal births, and down syndrome happened to be one of the cases that was discussed during one of my antenatal clinics. In fact, a lot were talked about it. Now, the features of a child with down syndrome that were listed during that particular lecture were all the features that my daughter manifested when I gave birth to her. Of course, I didn’t need further explanation to know that she had down syndrome”, she explained
The Cross River state-born child rights advocate who is very meticulous in whatever she does did not joke with her lectures during all her antenatal clinics in the UK.
She said, “Interestingly, 10 years after, little did I know that I was going to have a child with down syndrome. So, when I had her, in one of the best teaching hospitals in Nigeria, I was the person that discovered that my daughter had down syndrome. Like every other mother, you don’t ever expect that to come your way. That is why we are carrying out counseling because of this denial among parents. Incidentally, my daughter is a classic example of down syndrome.”
According to her, her daughter had all the features of down syndrome both external and internal.
Speaking further, she said: “So, when I saw her, I panicked and called the nursing sister who was there and asked her to take a look at the baby and she told me that the baby is beautiful . She maintained that the baby was OK.
“So, I showed her the various features of children with down syndrome: I pointed out the flat nose, low muscle tone, mark in the palm and so on. Then the nurse asked if I were a doctor, I said no, that I’m just a mother. She then smiled and left. It was at that point I realised that she knew nothing about down syndrome. Now, if the people in the medical field who should know better do not, then we have a problem. It was there and then the seed of establishing a foundation to raise awareness and cater for children with down syndrome was sown in me and to give support to parents of these children.”
Driven by a great passion to contribute her knowledge to the welfare of children with down syndrome, Mordi stopped at nothing to get the Foundation established which has so far put smiles in many families and homes that have children with down syndrome.
The Foundation has so far recorded great achievements. It has sponsored many children overseas for medical procedures, organised seminars locally and internationally and partnered with Special Olympics International. The Foundation has offered educational and vocational training for people with Down Syndrome. It has also done a lot of awareness creation and advocacy.
Recounting her experience in establishing the Foundation, the septuagenarian said, “When we returned to Nigeria, my husband and I worked for a while in different companies before he established his own which we ran together. After sometime, I told him that it was time for me to fulfill the promise that I made to assist families with children with down syndrome.
“So, I started working part time in my husband’s company. When he took ill, I could no longer continue with part time and running of the Foundation which was then an association. So I gave my full time to the Foundation which took my time.
“For the first five years that I ran the Foundation , it was funded with money from my husband’s company. It got to a stage that I had to sell some of our property, lands, stocks and other investments to put smiles on children with down syndrome.
After sacrificing all her investments yet without support from the government nor corporate organisations and individuals to run the foundation , the woman of substance refused to renege on her promise of integrating children with down syndrome into the society .
“At that time, nobody new anything about down syndrome, so the support was not there.The few who knew were not interested because it wasn’t a flamboyant thing. Anything disability, you find out people are not interested in getting into it like malaria, cancer and
others.
“But I was determined to move ahead because I’m somebody that if I believe in a cause, I give my 100 per cent to it. Though I was discouraged and tempted to close up a couple of times because of inadequate fund, but when I remember the number of families and children looking up to me for help, I became more determined and committed to continue”, she said.
Even when Mordi had the opportunity of returning back to the UK to join her family , she declined in the interest of these children with special needs.
Her words, ”In fact, there was a time when my husband and all my children were in the UK . I had the option of going back to the UK because I was alone here and my children are grown ups, but I said no and stayed back for the sake of children with down syndrome and their parents.
“At a point, when the challenge of finance became so much, I sold three out of our four cars to keep the foundation running. After that, I started selling my stocks and lands . Nobody knew that I didn’t get support from anywhere. When my children gave birth in the UK, I could not travel to see them because I was busy at the foundation.
” In fact, my children were not happy with me at some point because of my determination in ensuring that the foundation succeeds, asking why I should devote more time for other people’s children than mine. After five years, when I wante to close up when the financial challenge persisted , my pastor counselled me not to close down that God is happy with the lives that I’m touching. So, that made me cancel the thought of going back to the UK and continued. My pastor told me that what I was doing was touching God’s heart, assuring me that God is watching my heart and will step in when I cannot carry it anymore. And that was exactly what happened.”
Just as the scripture says, believe His prophets, so shall you prosper. The DSFN President believed her pastor and she prospered.
She joyfully said, “Surprisingly, all those people that I wrote requesting for support that said no to me before, starting calling and donating to the foundation. I must thank the gentlemen of the press for their support. I got a good media support and the awareness created in the media also influenced the support that we got from the corporate world.”
For the grandmother of eight , tough times never last but tough people do as she vows to spend the rest of her life caring for children with special needs.
