Having albino child made life more interesting for my family

Having albino child made life more interesting for my family

 

 

— 26th September 2017

By Egbuzobi Chinwendu And Ofoedu Kelechi

 Mrs Rita Chinwe Okagbare’s daughter, Onome is an albino. She is not sure of exactly when she realized that her skin tone was unique. However, it was in the secondary school that a teacher picked on her and teased her with her complexion.

With this experience, Onome grew up with the idea to help create awareness on albinism as well as educating them on how to properly take care of their skin.

Mrs Okagbare, who has encouraged her daughter in the face of all odds and stigmatization, helped her to start up a Foundation, Onome Akinlolu Majaro Foundation (OAM Foundation) with the aim of ending the discrimination against people living with albinism, and to promote the wellbeing of persons with albinism.

Daily Sun had a chat with Mrs Okagbare recently in Lagos

Can you tell us about the OAM foundation?

Onome Akinlolu Majaro Foundation (OAM Foundation) is founded on the belief that enlightenment added with a little act of love and kindness can change the way people living with albinism are treated.

The focus of the Foundation is to stimulate a movement that roots out socio-cultural stereotypes about albinism in Nigeria and the world, and plant the seeds of empowerment for people living with albinism.

OAM Foundation is passionately committed to ending the discrimination against people living with albinism, and to promote the wellbeing of persons with albinism.

The Foundation campaigns are focused on facts on albinism, perception change, and the conditions of people living with albinism. A major goal of the Foundation is to encourage people living with albinism to step out of their shells, improve their confidence, so that they can talk freely on issues relating to social stigma and misconceptions.

What informed the decision to establish the OAM foundation?

While growing up, my daughter, Onome always had the idea or vision to help create awareness on albinism, seeing how many persons living with albinism did not know how to properly care for their skin, and how much the society did not know about albinism.

However, what informed the immediate establishment of the Foundation in October, 2015 was because after Onome’s wedding in April, 2015 her wedding pictures went viral and a lot of people reached out to her, especially persons living with albinism who wanted to share in her experience.

Can you tell us some of your daughter’s experiences and how she was able to manage them?

Her experience has been relatively good. She is blessed to come from a family that loves and supports her. My husband and I learnt a lot about albinism and took proper care of her.

She has been teased, mocked and called different derogatory names while growing up. But she understands that much of these can be traced to ignorance or lack of education about albinism on the part of most people.

I like to mention that there is another side of the coin. Having an Albino daughter has made life quite interesting for my family. With each new day, there is a possibility we will hear some very flattering comments, or find out some myth about albinos (such as not eating salt and spicy food). One thing she has learnt is the importance of surrounding herself with supportive people, who are comfortable being with her.

How does a mother protect her child that has Albinism?

A child living with albinism needs to be protected from the sun as their eyes are extremely sensitive to light.  Your child should always wear sunglasses, as well as, wear a hat that has a brim to give some shade to protect his/her eyes. 

If your child has trouble seeing in school, you can ask the teacher if he/she might move to the front of the classroom. You may also need to see the eye specialist for prescribed glasses or even surgery in some cases.  

Your child’s skin is also very sensitive and can get burned easily. A child living with albinism may develop sores and skin cancer if not protected against the damaging rays of the sun.  You can do several things to help protect your child’s skin from the sun.  First, try to avoid having your child out in the sun from about 10 a.m. to about 4 p.m.  At this time of day, the sun’s rays are the hottest, most direct and can hurt your child the most.

Outside chores should be done in the early morning or in the late afternoon when the sun’s rays are not so damaging. Your child’s skin can also be protected with long-sleeved clothing. It is also very important to wear sunblock lotion to protect their skin, especially, the skin areas that will not be covered by clothing.

How was she able to achieve the Foundation’s mission?

The Foundation is currently self-funded.  On few occasions she had got support in kind. She had also received tremendous support from people, often not in the form of cash, but time, energy and networking.

The Foundation ambassadors have been very instrumental in the progress she has made so far.

What would you say has been the outcome of your advocacy?

When we started we received a lot of good feedback from some persons living with albinism.

They were inspired to share their stories which made people realize that discrimination against albinism truly existed, though not as profound as racial discrimination. This inspired the OAM Foundation to do more; sharing stories, asking questions like “do you have a friend with albinism”, “can you date an albino”, and “will you employ a person with albinism”.

Yes, some people don’t like change. They don’t like to hear the truth behind the myths, we once had to plead with a parent to keep their albino child in school but they refused saying it was a waste of resources. We have also been told that we are making a big deal out of what isn’t. Some people are still in denial of the discrimination that exists against albinism.