A boy with an iron will

2015-08-24 08:51
Olebogeng Montsho, 10, with an award for persistence he got from Meerhof School. (Thomas Hartleb, News24)

Olebogeng Montsho, 10, with an award for persistence he got from Meerhof School. (Thomas Hartleb, News24)

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Lethabong - Like any 10-year-old, Olebogeng Montsho knows how to use a phone better than his father. His head is bowed over a smartphone, his right thumb sliding across the screen, shuffling the icons. His blue school shirt hangs out of his grey trousers.

He keeps his feet flat on the ground, as if he is about to get out of his red wheelchair.

“The will is there, but the power is missing,” his father Molaole Montsho says.

Olebogeng was 4-months-old when his parents realised something was wrong. He was sleeping a lot, his voice was weak and he lacked muscle tone.

After four weeks of tests at George Mukhari hospital in Ga-Rankuwa, doctors found a small hole in his heart, and thought this could be causing his listlessness.

Myopathy

Further tests revealed he had myopathy, a disease that causes muscle weakness. It is either acquired, or, in his case, inherited. The hole in his heart closed on its own within two years.

At 1, he could shuffle around on his bum, but he lost the strength to do that. He sleeps in his own bed in his parents’ room and calls to them at night when he wants to be turned.

Olebogeng can shrug, lift his right arm to chest height, and rock back and forth in his chair. In a few years he will need surgery to correct a defect in his jawbone and fix his V-shaped palate, which causes his mouth to hang open and makes it difficult for him to speak. His spine will begin to curve and his chest balloon out as he gets older. He will need a brace to stay upright.


Molaole Montsho and his son Olebogeng. (Thomas Hartleb, News24)

“I was angry and I asked myself many questions. Why is this happening to me? I could not find any answers,” his father says.

Montsho and his wife were both in denial, but gradually came to accept the situation. He realised denial would prevent him from dealing with the situation.

“I don’t view him as a problem, but as a challenge to help him cross to the next level of life. I take it as a blessing. God saw fit to give us a special child. If you have to equate parents, us, we would be special,” he says.

Special school

In July 2011, aged 6, Olebogeng was admitted to Meerhof, a non-fee Afrikaans-medium school which caters for special needs children. It is on the banks of the Hartebeespoort dam, 75km away from their home in Lethabong. Olebogeng stays in the hostel.

Every Sunday, Olebogeng is taken to the school, and picked up again on Friday afternoons. For eight years, Montsho, a journalist, worked in Johannesburg and would make the 280km round trip. He is grateful for the support of family members, who pick Olebogeng up and drop him off when he is unable to.

Leaving him there that first Sunday afternoon, it felt like they were abandoning him. Montsho, his wife, brother and sister were in tears.

Driving back they were quiet for a long time, then his wife asked him what he was thinking.

“If it’s good for him, let it be, it’s better for him,” Montsho recalls.

To add to the heartache, the school only allows parents to call to check on their children at 19:30 on the Monday. The number they call is for a public phone next to the school’s front entrance. On that day it was out of order and rang unanswered.

Olebong has adjusted well to the school, which Montsho says is like a family to him. And his Afrikaans is rapidly improving. "They teach them to be independent and their primary concern is for the child's health, not their academic record," Montsho says.

In 2014, he missed the first term of school because he was ill. At the start of the second term, Olebogeng told his parents he would work hard. By the end of that term, he had caught up and was back on the same level as his classmates, earning himself an award for persistence.

Olebogeng tells him he wants to grow up to manage his own bank so his father will "not be broke all the time".

See life with a different eye

Montsho realises he is luckier than some parents, whose children have far worse difficulties than Olebogeng.

Having to be there for him brought him closer to Olebogeng, who has a 15-year-old brother, and two younger siblings, aged 8 and 6.

“I want him to be able to stand his ground and strive for whatever he wants to achieve. I don’t want him to see himself as dependent on others.

He will not allow other people or children to feel pity for them, because he does not want Olebogeng to feel like he is different.

Montsho says he now understands that disabled facilities, like special parking bays, are there for a reason, and wishes others could understand and respect this.

“If people could start to realise the need of people in wheelchairs and on crutches, they will see life with a different eye.”

Read more on:    mahikeng  |  health

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