When Crystal Chigbu became a mother in 2009 to Beulah Irede Chigbu, she wasn’t ready for the special journey ahead because Beulah was born with a birth defect, Tibial hemimelia, the absence of the knee cap and the big bone between the knee and ankle. There was only one option, and it took Crystal and her spouse, Zubby two years to take that option, amputate the limb. That one amputated limb story has evolved to a life changing NGO providing prosthetic limbs and other assistance to poor child amputees aged 0 to 18. She started Irede Foundation in 2012, hoping to run it alongside her good paying job, but passion overtook that decision. This wife, mom, social entrepreneur and author shares her stories of limbs and passion with CPAfrica.
So you left your paid job eventually for the NGO?
Yes, I resigned my job 2 years ago. I dropped my resignation, first a verbal resignation in November 2014 and I put in my letter April, 2015 and by June 30th I left, because one had to do a 3 month notice. I decided to leave because the demand for the Not For Profit was becoming higher. Initially, I had a coordinator that was doing the work on my behalf, so I’ll spend my evenings, nights and early mornings with the coordinator and we would agree on things that needed to happen and as soon as I close from work, I would be there again. So literally, I was taking up her entire life because I had to connect with her to know where we were and how we were doing. Then I started doing a lot of travels for the NGO at some point in 2015.
I had to go to the UN to run a side event to talk about the foundation. I then realized I couldn’t manage both together anymore. I was practically leaving my office work, taking excuses to go and do things for the foundation and it was becoming one too many. So, I decided to resign and give it a shot. Also, it was coming out of me knowing that there was so much we could do but weren’t delving into because I wasn’t available. One of the things I have learnt is that what you don’t give attention to does not get into its full potential. So I had to give all of me to it to see it be what I want it to be and grow so much. I want it to be here 300 years after I have left.
Looking back into the last 3 years, was leaving your job a good decision?
Oh yes; It is. I’m successful at what I’m doing and I’m happy and fulfilled. For everyone that cared to listen, I tell them I really loved my job. I stayed there for 13 years and if you don’t like something you won’t be there for 13 years. But I’m more fulfilled. The smiles on the children’s faces, the smiles on the parent’s and caregivers faces make me very happy. This feeling wakes me up in the morning, makes me resume here daily and keep me pretty late sometimes. This makes me very happy.
How many limbs so far? Based on your initial projections, does the number excite you?
The number is quite exciting, pretty small but exciting. In 2012, I remember we did two prosthetic limbs. Two limbs because the amputee we took on that time is a bilateral amputee so we had to do 2 limbs for her. As at the end of 2016, we had done 48 limbs. So when I look at the mathematics, from 2 to 48, that’s pretty high. So that’s exciting. Is that where we want to be? No. This year alone , we are projecting to do 30 limbs. It is interesting because we don’t just provide new limbs. We are responsible for the change of prosthesis for the children we have taken on till they are 18 years of age. Sometimes in a year, we provide replacements. Last year, we did 21 limbs, more than 80% was new. That’s exciting. This year, we have done 11 limbs already, so we believe we should be able to do the 30 by the end of the year. If you look at it then, we would have done about 78 limbs at the end of 5 years.
Prosthetic limbs are pretty expensive; How do you go about funding aside your yearly awareness walk?
70% of funding for Irede Foundation come from individuals , 20% from corporate bodies and the other 10 % from our yearly awareness walk, Out On A Limb. It’s not been easy but we have been getting funds. It keeps getting better year after year. What we are doing differently is to try and see how to reduce cost per prosthesis limb because that way we can do a lot more. We are also beginning to think of recycling the prosthesis that we have used in the past should we have parts that may be reusable for the other kids.
How often do you get to change the limbs?
Because children are in their growing years, they grow taller and bigger and their prosthesis get uncomfortable, so we change the prosthesis. I like to say it’s just like an outgrown dress, it becomes pretty uncomfortable when you have outgrown it and it doesn’t matter when you got it. For children that are under 5, we change the prosthesis every 6-9 months, for children above 5 years, we change between 9 and 18 months. As they grow older, the rate of change reduces.
What other challenge do you have asides funding?
The other challenge is the cost of the prosthesis, not necessarily the funding. We don’t manufacture in Nigeria, we import them. Because we have an unstable FOREX rate, it impacts the cost. It leaves it on the high side. That reduces what we can do in numbers. Being unable to have local manufacturers is a challenge for us.
Another challenge would be awareness. There’s still more awareness to be done about accepting people living with disabilities. Disability is not something that is easily accepted around here. one of the things we are working at is creating a lot of awareness. I’ll give you an example. Recently, one of our child amputees got her new limb. When she got to school with it, other kids were making fun of her and because of that she didn’t want to have the prosthesis anymore.
Stigmatization is a big deal; How do you work through that with the child amputees?
We have a process we follow which is called the 3Es -Educate, Encourage and Empower. Encourage is the support group system. We work majorly with the parents and care givers. Parents stigmatization is a big deal like you noted, when the parents are stigmatized, it affects the children. So we have a platform where we reach out to the parents of the amputees, we connect with them on Whatsapp and Facebook groups. We work to boost and support them and to ensure that they have all the knowledge they need to address the outside world and also to give them comfort and confidence in their journey.
The parents get to share their experiences with each other, throw out their challenges and questions and the ones who have gone through that phase get to encourage others and we learn from each other. Caregivers and parents feed the child with information and transmit their confidence and positivity to the children. If the parent is confident and happy and not having issues, it’s easy to reach the child. We also have mentoring sessions with the children, we bond over videos, pictures and stories of amputees that are succeeding.
This brings to mind a 14 year old amputee we work it. He wasn’t born with the disability. Rather, he had an accident and his hand was amputated. So after he got amputated, he chose to wear agbada (big flowing robe) just to cover it up. He would always come with the agbada, so one day, he had contact with me and I showed him videos of my daughter, her pictures and all. And he started asking questions and I was answering, by the time we were done, he folded his robe while leaving. We go to schools to educate other students so that there’s an acceptance within the school environment. Once there’s an acceptance, the children are free and feel loved enough to thrive.
Asides running the foundation What other things do you do?
I’m the mother of my children. I try to be there for them. I run some other businesses. I’m also an author. I have written a memoir of my life from marriage till now, sharing the story of Irede also. I’m also working on some other parenting books.
What fuels this passion?
I love to share. I don’t have much but I love to share whatever I have. I know clearly I’m doing what I’m meant to be doing, be it the time I spend with my kids, the kids at the Foundation. I get to work with a lot of people, young parents, and I talk a lot. I find comfort in trying to comfort other people.
What would you consider your favourite mantra?
It changes over time but presently it is this – Disability is a thing of the mind. If you think you have a disability at any point, check it again, it’s in your head and mind. It is something you need to have a different paradigm about and voila, you are a happy person!