He is eight years of age but Khotso Chelepe has not tasted food in his entire life, and feeds via a tube inserted into his body through the stomach.
And unlike his age-mates, Khotso cannot walk around as he is wheelchair-bound, while he also cannot utter a word due to his disability.
All the boy does the entire day is sit near his mother, Limpho Mohapi, who instinctively knows when her child needs help.
Khotso smiles shyly as his mother feeds him his special milk, before topping-up his only meal with sterilised water.
When the Lesotho Times crew visited the family at its Lithabaneng home yesterday, Ms Mohapi said her son was only alive “through the grace of God”, and of-course, well-wishers.
“His only meal is this special powdered milk, which requires special attention to mix it with water. Apart from the milk, Khotso can only have cold but sterilised water or coke,” Ms Mohapi said.
Khotso’s milk, Pedia-Sure, is a special brand his mother says she could only get from a certain outlet in South Africa.
“This tin of Pedia-Sure (900 grams), which he finishes in three days, costs R200 at (name of the shop withheld) where I can only get it,” Ms Mohapi said.
Born “strangely” but normal on 29 January 2007, Khotso only developed a “special kind of disability” eight months later, which has since not only baffled local doctors, but even South African specialists, according to Ms Mohapi.
The 32-year-old single mother said she “unexpectedly” gave birth to Khotso, “because there were no signs that I was ready”.
However, with the boy looking and behaving normal, Ms Mohapi said she was surprised to realise something “was just not right” when her son was eight months of age.
“When he was eight months old, he developed a sickness which made him shiver continuously.
“And all of a sudden, my child showed signs that he could not use his limps, and he became silent. I then took him to Queen (Elizabeth) II Hospital for treatment, not knowing we would be admitted for three months while doctors tried to find out what was wrong with my child. He was tested and re-tested by the doctors and the results were a confusing negative and positive in every illness he was being tested for. And his health was deteriorating alarmingly all the time. At last, the doctors said my child was suffering from brain damage,” Ms Mohapi said.
Khotso was discharged from Queen II in January 2008, with the hope that he would go for treatment in South Africa.
“I had to let go of everything, including my job at the textile factories, to always be around my boy and take care of him. The processes to transfer Khotso to Bloemfontein hospitals by government, were very long. Eventually, we were admitted at Universitus Hospital in Bloemfontein on 10 November 2008 for about a month. This was where specialist doctors confirmed Khotso had brain damage, a condition which paralysed his entire body.”
When Khotso and his mother were discharged from the hospital on 1 December 2008, it marked the beginning of a struggle for survival.
“I undertook a one-year programme on Special Needs in 2011 through the advice of the doctors so that I could professionally take care of Khotso. I was able to complete the programme in Bloemfontein, where I pursued the entire programme—thanks to some local organisations and individuals who sponsored my entire learning process in terms of tuition, accommodation, transport and other necessary fees,” she said.
However, Ms Mohapi says she has continued to struggle as she also looks after her other son who is 13 years of age. The family lives in a four-roomed apartment in Lithabaneng, and Ms Mohapi says her husband left her in 2011.
“With the help of a certain American woman whose name I cannot mention without her consent, we were able to move from where we previously stayed to this better apartment. This Good Samaritan is paying M1, 500 per month as rent for our stay here. She also pays for other treatment fees and food for Khotso,” Ms Mohapi said.
Khotso goes for routine checkups at two local medical facilities, as well as two others in Bloemfontein. He also visits a specialist based in Ladybrand, South Africa.
“It is a must for him to attend all the medical check-ups in Lesotho and South Africa. And this costs money, which I don’t have. Khotso has a funders’ bank account but sometimes it has as little as M40, and I would be stranded,” she said.
However, Ms Mohapi said she recently stopped taking her son for checkup at a certain facility, allegedly after being told the bill had accumulated to M68million. The Lesotho Times could not verify this information with the hospital yesterday.
Yet what has added to Ms Mohapi’s distress was news by the Ladybrand specialist this week that the boy was developing “animal teeth”.
“Only yesterday (Tuesday), the Ladybrand specialist discovered Khotso is growing animal teeth, and not normal human teeth. This has come as a shock to me but I must confess he had become aggressive and was biting everything and anything,” she said, adding she had not been told what the “animal” was hence the need to take him for further tests.
But while Khotso has an appointment to have the teeth “looked at” in Ladybrand today, he might fail to make it because his passport has been declared “invalid” and needs R1, 500 to be “fixed”.
“We used to cross the border on a weekly basis, and immigration officers would always complain that Khotso’s passport was indicating that he had overstayed in South Africa at some stage. This came as a surprise to me because my son has never gone to South Africa without me. I have always travelled with him so if his passport has a problem, so should mine, yet this is not the case here. For a long time, I had told them it was their fault if Khotso’s passport had a problem and I was thinking they would understand. But only yesterday, they demanded R1, 500 to fix the problem, and I don’t have this money,” she said.
Khotso travels in a special wheelchair donated to him by Universitus Hospital in South Africa. His feeding tube, worth around M5000, is perishable and should be replaced after every six months by an expert.
Ms Mohapi hopes to open a daycare centre for disabled children and utilise the skills she has acquired taking care of Khotso and the Special Needs training she attended.