Mother of child with craniosynostosis pleads: “Let us embrace each other’s differences”

By: Poelano Malema

Raising a child who is disabled, has special needs or looks different from others is very challenging.

Some parents are ashamed of raising such children and choose to hide or abandon them, but not Boitumelo Kola, the mother of Pearl Rikhotso (10).

Boitumelo says right after giving birth to her daughter, she had a protruded forehead and it was discovered that she suffered from craniosynostosis – a birth defect in which the bones in a baby’s skull join together too early. She adds that the child even had a hole in the head.

Soon after that, she had to undergo a surgery at 15 months to try and fix the bones.

The operation was successful, and the mother says her child is very intelligent and is developing well.

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However, even though Pearl is a normal child who is intelligent, she gets teased because her head and eyes looks different.

“She is not disabled. She is so intelligent and even funny, but the problem is that she is differently formed,” says the mother.

She adds that it has not been easy raising the child and she draws strength from God and loves her unconditionally.

“When I first got her, I asked God why. But now I have changed my tune to “why not me?”. I’m saying if she wasn’t birthed by me, she would have ended in a family that would have rejected her or hid her or not even taken care of her. I’m not going to do that. I’m with her for life,” says the proud mother.

School challenges

Boitumelo says people advised her to take Pearl to a school that caters for children with disabilities.

“I told them this child is not disabled, she is just differently formed,” says the mother.

“Doctors also advised me that she is too intelligent, and she should go to a normal school. I was told that if she is taken to a school of children with special needs, she might be drained and try to adapt to such schools.”

Today, Pearl is in Grade 4 and is doing well at school.

The mother says she often has to assure her child of her beauty as kids at school tease her.

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Special talents

Apart from being intelligent, Boitumelo says her daughter is a talented dancer.

She says when she was younger, she wanted to be a doctor, but now she says she wants to become a professional dancer.

“She wants to be a doctor, but I think I had more influence in that because I thought she could give back to children like her. That’s my dream, but now she says she wants to be a dancer,” says the mother.

Drive to educate

Boitumelo says she has a dream of going around schools to raise awareness about children who look different from others.

“I hope to have a drive with her, visiting different schools to put awareness that she might be differently formed, but she is just a child as you are. When you teach kids, they grab it quicker than older people and they tend to have mercy and be gracious to the person they were repelling.

“My message to South Africans is that we are all born different. In one way or another. I’m left-handed and was always teased for that. I cannot pronounce the letter R and was teased for that. Each one of us has something different. I’m pleading for mercy for each other, for every individual. Let us embrace each other’s difference and accept another,” pleads the mom.

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Written by: Poelano

craniosynostosis Disability Pearl Rikhotso