How tata changed my life

By Neo Semono

It’s been more than 17 years since a desperate mother wrote to the late South African icon and former President Nelson Mandela asking him to help secure a surgery for her child suffering from a rare medical condition.

Several pleas later – in the form of endless letters, and a telephone call from  Madiba himself – the life of a young girl was changed, as well as that of many other children also suffering from the same medical condition.

Now in a month that South Africans remember Mandela’s legacy, Thando Manyathi remembers how tata changed her life forever.

Thando was born with a rare medical condition causing facial nerve paralysis. In the medical field, the condition is also known as Moebius Syndrome. The condition deprived Thando of one thing no human being should not have – a smile.

Worried and confused by her daughter’s unusual condition, Thando’s mother, Thabile Malambo Manyathi relentlessly wrote letters monthly to Mandela appealing for assistance to help her child travel overseas for a highly specialized procedure known as Facial Reanimation surgery. The operation would correct the Facial Paralysis with which she was born. 

As fate would have it, the mother’s desperate plea found its way into Madiba’s personal pile of letters, and without a second thought, tata made the call.

He called my mom. Initially she thought she was being pranked. Only after she knocked off from work did she realise that indeed she had spoken to him,” Thando says gleefully, displaying her pearly whites, in an interview with SAnews.

Mandela, who was President at the time, called on the help of businessman Marc Lubner - who would later go on to become the Executive Chairman and co-founder of a foundation that would give a smile to many other children. At the time, there were no surgeons in South Africa with the surgical experience to perform the complex procedure that little Thando needed.

The little girl would have to travel to the United States to consult specialists. However, it was soon clear that sending one child abroad at a time was not going to be sustainable. Instead, with the help of other sponsors, the Lubner family convinced renowned specialists Dr Ron Zucker and Dr Craig van der Kolk to travel to South Africa and train Professor George Psaras to perform the surgery. The training would in turn enable him to help many other children.

The operation meant that muscle had to be removed from the then eight-year-old Thando’s thighs and be implanted into her cheeks. Although the operation gave Thando her  smile, it also changed her facial look.

“People look at me and ask me why I look like this; why my face is like this and this makes me feel very shy,” she says.

Dressed smartly in a gun metal skirt with white spots, a formal black top and elegant earrings on a rather warm day, despite Johannesburg’s winter,  the young lady expresses her discomfort with the daily questions she has to contend with.

“People that don’t know me often stare at me or ask me why I look like this,” she says during an interview held in one of the boardrooms at the Smile Foundation.

The Foundation was formed in the year 2000 after a personal request from Mandela to help not only Thando to smile, but other children with similar life challenges. To date, the lives of more than 2000 children  have been changed. It now has a footprint across 10 academic hospitals around the country, including Charlotte Maxeke. At these hospitals, the foundation supports the departments of plastic and reconstructive surgery.While Tando has a scant memory of the pain she felt as a result of the operation, she does have a vivid  recollection of a special visitor who came to see her at what was then known as Johannesburg General Hospital, where the procedure was carried out.

“When he first came, I didn’t know that it was tata Nelson Mandela, I was only eight. I do remember that he read a book to me while I was lying in the hospital bed.”

Thando cannot recall  the book’s title other than that it had a blue cover.

She also recalls that the then first black President of South Africa was accompanied by the then First Lady Graça Machel who took a picture of her with Madiba.

A slightly older Thando met Mandela for the second time when she was invited to his birthday party at his home in Houghton, Johannesburg.

Dressed in their school uniforms, Thando and her brother, accompanied by their mother, presented President Mandela with a birthday card.

“When we met for the second time, I definitely knew who he was then. To this day, he is still my hero.”

She will always remember Mandela as a man who loved and had patience for children all over the world.

These days, Thando is giving back to the community by doing work for the Smile Foundation as well as another Non-Governmental Organisation. She also spends time with the children of ward 275 at Charlotte Maxeke hospital.

She spends Wednesdays and Thursdays at the hospital while splitting the rest of the work week between two non-governmental organisations.

Days at the hospital are spent reading books and playing board games with the children. Other activities include making beaded bracelets.

“I can’t wait for the days when I go to the hospital as I enjoy spending time with the children,” she says.

Her advice to children with facial deformities and those in need of operations is for them to be strong and have a “thick skin”. They will also need their families to help them through the process.

“Self-confidence is not something that comes overnight. It  took years for me to acquire it.”

While only a few of her friends know of her operation, getting older has helped her deal with the constant stares she gets.

She sometimes gets nervous when she has to go to a public gathering as she is unsure of how people would react to her appearance.

“It worries me but now that I am older, I can handle it better. I simply ignore the stares and just carry on.”

Thando’s dedication to helping children would in no doubt make Mandela, who would have turned 99 this year, proud. Children were very special to Mandela and at some point when he was President, he asked that a portion of his salary be donated to charity organisations that looked after children and their needs. -SAnews.gov.za