Tola Makinde: Giving Persons Living with Down Syndrome a Voice!

Today’s feature is about a Nigerian Down syndrome advocate, Tola Makinde. A woman who has relentlessly fought to create an accepting and inclusive society for persons living with Down syndrome. NigerianNGO recently had an interview with Tola and we hope you enjoy it!

NigerianNGO: Tell us about yourself?

Tola Makinde: My name is Tola Makinde. I am the Founder and Executive director of Morainbow Down syndrome Foundation, the first Early intervention center for persons with Down syndrome in Nigeria. I’m also a certified Early intervention specialist with a Master’s degree in social Innovation, BSc. In Management studies, and a Professional diploma in Early childhood education and Child Psychology.

NigerianNGO: What Inspired you to start the Morainbow Down Syndrome Foundation?

Tola Makinde: In 2011, when I had my daughter, a diagnosis of Down syndrome was delivered to me 5 days after she was born and that really broke my heart into pieces. The idea at the time was if you have a child like that, you must have offended God or the gods and those were the kind of remarks and messages I got from my community and church. Nobody understood the condition, they called a meeting and judged me wrongly saying I had offended God and having a child with Down syndrome was the result of my disobedience.  I was told to ask for forgiveness of my sins. The stigma left me confused and sad. Amidst the pandemonium, I was depressed after finding out my daughter’s heart was ravaged with a disease, and she was slowly dying, in need of a heart repair. I had bad dreams every other day with no respite and day and nighttime hallucinations. I could hardly breathe at the thought of it and suffered from a migraine that went on for days unending.  I was so ashamed and couldn’t show my baby to anyone let alone pick calls from people who wanted to congratulate me. My pillow was wet with tears daily and I developed a high blood pressure.

Fast forward to getting help and reassurance from the United States where I took my daughter after her surgery in India, I came back to Nigeria better informed and deliberate about her care and empowerment.  The first time I posted my daughter’s picture on social media, someone called her an animal. That comment made me cry so much but then I was more than ever determined to see that persons like my child would have a place in their society where their voices would be heard.  It was extremely difficult.

I was so afraid and did all I could to set children free from this bondage. The experience became an eye opener for me as many more children like my daughter were discovered in my neighborhood, some locked up in their homes and secluded from friends and the community. Then my advocacy journey began.  Mind you I was carrying my cross and started to look out for other children like my daughter because I knew she was not alone; we were not alone. 

I used to be in a vulnerable place, and I thought shame shouldn’t be a part of any emotions I’m feeling hence my resolve to be that voice for parents of children with Down syndrome. Parents would not want to be seen talking about their children’s condition, but I made it a point of duty to open my arms wide to receive anyone on this journey.
I noticed that before and after surgery, I paid attention to every detail about her because I understood that she may have milestone developmental delays. We started early intervention at about 2 months and moved forward painstakingly every day. She had all the support she needed from us but it was indeed a tough time for us all, selling most of my luxury items, resigning from my 11 years banking career and closing down the 2 kids fashion/education outlets I ran.  I dreaded it back then but moved from my struggles gradually.  That was how far I could go for the one I really loved so much even though I was told to go and have another child because my daughter would forever be good for nothing.

NigerianNGO: Wow, this is so inspirational. What are some of the success stories from Morainbow Down syndrome Foundation?

Tola Makinde: So far we have facilitated the fundraising of 5 successful heart surgeries. We have also had countless number of advocacy walks in various local Government areas and grassroot communities around Lagos state. In addition, we have had 6 episodes of an inclusive creative arts play for people with learning disabilities and their caregivers. We have moved from a one room (a tiny space) to a shared house and we are now in a bigger facility (10 times bigger than where we started) which is rented.
 
We received a honorary recognition from his excellency, Lagos state Governor and her excellency, the first lady and the Lagos State Office of Disability Affairs (LASODA) for the work done so far. We have also partnered with international organizations such as Playhouse New York and a number of others. It has been a great ride so far with amazing friends we have made from far and near on social media.

NigerianNGO: How does your organization receive support in terms of funding?

​Tola Makinde: Well, we have once in 8 years, received financial support from the Government, we have twice received funds from two other charity organizations via nomination and spotlight from organizations like yours. 

So far, we have not really been recipients of consistent support from any quarters and so, we rely on funds from private individuals and organizations who have found our cause worthy. About two private organizations, family and friends have been consistent with annual and monthly donations respectively. It is so amazing to see their consistency and this has helped us deliver continuous intervention to those we support as we advocate with them for better healthcare, education and inclusion. Over 75% of our learners pay no intervention fees or tuition fees since they have been adopted.

NigerianNGO: What are the challenges you faced in bringing the vision of Morainbow Down syndrome foundation to life?

Tola Makinde: The vision is to see a world where persons with Down syndrome can live life to its fullest. To achieve this, we would need to support them to achieve independence. We have had a great challenge with paying for housing/accommodation yearly, paying teachers and administrator’s salaries.  Sometimes, we want to carry out impactful projects but have a change of mind due to lack of funds, other times we want to raise funds for urgent heart surgeries, and it takes months with fingers crossed that the baby would remain alive.

NigerianNGO: What events or projects do you have coming up in the near future?

Tola Makinde: We have the following projects coming up in the near future:
1. Christmas concert usually held annually.
2. World Down syndrome day which holds annually on March 21st to increase awareness and drive inclusion of persons with Down syndrome in our society.
3. Down syndrome awareness month which is every October, we would love to have some street/community activities but no funds. 
4. We intend to launch an initiative in the near future which would entail collaborating with the Government or well-meaning organizations who can help ease the burden of the persons we support and their families. ​

NigerianNGO: Do you have any words of encouragement to a parent raising a special needs child?

Tola Makinde: I want parents who have children with special needs to know that their children are unique, blessed, talented and can thrive in an environment where there is love, support and understanding.
 
NigerianNGO: For readers that are interested in your work, how can they connect with you and support your initiative?

​Tola Makinde: Readers are welcome to connect with me via the channels below. You can also reach out to us if you want to sign up as a volunteer. We need all hands on deck to push this work forward.
Email: [email protected]
Instagram: @Talk2tolah or @Morainbow_downsyndrome.

​We hope you enjoyed this feature and we look forward to greater achievements from Tola Makinde and the Morainbow Down syndrome Foundation.