When she was just a baby, Pearl Pamela Nyangoma was diagnosed with a congenital heart problem which affected both her heart and brain. She has to fight stigma every day of her life and dreams of taking this fight to the world stage, writes Samuel Lutwama
The first five minutes after you meet 20-year-old Pearl Pamela Nyangoma, you realise she is brilliant.
She can reel off the finest details about the lives of her favourite celebrities.
For example, she knows nearly everything about the late pop icon, Michael Jackson and the entire Jackson family. She has a photographic memory, which enables her to recall the events in her life with the precision of a razor.
But behind her smooth light complexion, charming smile and gifted memory, lies the life of a girl who was born with a congenital heart problem.
From birth, Nyangoma has struggled with the effects of this rare condition which, according to medical reports, affects one in every 145 births. Causes may include faulty genes or chromosomes.
As fate would have it, Nyangoma was born with it, but her twin brother, Patrick Peter Kato is healthy. At an early age, she went through two major heart operations that left her partially blind. By the time she gained understanding she could not perform basic physical functions.
Quite often, she was dismissed as mentally challenged and ridiculed by classmates. Nevertheless, with the help of her supportive family, particularly her mother whom she dubs “my hero”, Nyangoma overcame the prejudices.
She realised that she was just as normal as the other children or even better than some of them. For this reason, she has refused to be identified by her plight.
Her quiet strength and fortitude has enabled her to defy the odds and dare to dream to be a celebrated actress some day. “I want to change the misconceptions people have about children born with disabilities,” Nyangoma says with a disarming smile.
Nyangoma was born on March 23, 1993 with her twin brother at the former Kisekka Hospital, to the late Patrick Mawanda and Winnie Mawanda, who now lives in Bugolobi Flats with Nyangoma and her siblings.
According to her mother, Nyangoma’s birth went well, but all of a sudden, doctors realised that she was fighting for her life.
She was diagnosed with a congenital heart problem, tetralogy of fallot which affected both her heart and brain. From birth, periodic illness became part of her life.
At one-and-half-years old, Nyangoma was flown to England for possible heart operation, only to be informed by doctors that the operation would endanger her tiny body.
They had to wait five years before she was taken to South Africa for open heart surgery. The operation went well, but left her partially blind.
Loved at home, scorned at school
When she reached the school-going age, her parents wanted to enrol her to schools which cater for children with special needs like Nyangoma, but it was an uphill task.
“Some of her classmates would call her all sorts of names.
She would report to me ,asking why children called her stupid and yet she is not,” Nyangoma’s mother’s recalls with a faint smile that depicts the pain she felt on behalf of her daughter.
“According to me, she is a special girl inside out.
Nyangoma has always been the apple of the family. Because of that, she did not grow up with self-pity like other children with special needs,” her mother says.
With the support of her family, she eventually grew up to be a delightful and observant girl. She developed a photographic memory which she intends to use in her dream career of being an actor.
“Sadly, however the education culture in Uganda does not acknowledge children with special needs as normal children and little is done to bring to life what lies beneath the surface of such children,” Nyangoma’s mother laments.
“I proposed the name Grace because it was God’s grace to spare her,” she adds.
Nyangoma admits that her school life has been fraught with difficulties, but this has instead motivated her to fight for the cause of other children like her.
Today, she intends to show the human side of children with special needs through drama.
“I want them to be seen as individuals, rather than being judged by their physical limitations,” she explains.
Although she has been subjected to all sorts of ridicule while growing up, she has an incredible positive spirit and this has given her the strength to dream big.
“It was not easy to integrate her in school because the operation affected her sight. Therefore, she could not concentrate on her academics like other children,” her mother says.
At that time, Nyangoma’s parents wondered what she would amount to in life without special education. But they always believed the best for their special child and indeed she has come a long way.
Nyangoma started school at Little Cranes Kindergarten in Kampala; she later joined Naguru Hill Preparatory School with her siblings.
“I enrolled all my children in the same school because I did not want to make Nyangoma feel that she was different from the rest of her siblings. We also intended to nurture her esteem while at home,” her mother remarks.
She passed with aggregate 16 at her PLE. During exams, a teacher dictated the questions and she answered. Her mother believes the girl would have scored much better, but mathematics is not a subject that someone can easily dictate for another.
She was enrolled at Kyambogo Demonstration School for her O’level. Here, derision became a bigger issue. She was in a class of many children who had no regard for children with special needs.
Teachers at the school had no time to identify the areas she was gifted in and some dismissed her as unteachable.
In class, she could easily know when classmates were making fun of her, which dampened her spirit.
As she became more and more stigmatised at her school, it was necessary to change schools. She was enrolled at Rainbow International School where she completed her O’level. While there, her talent in drama was tapped and she prominently featured in drama clubs at school.
However, because of her special needs, she did not go on to A’level, but her spirit of changing her world and the world of other children with special needs remains strong.
She has progressed and acquired a certificate in garment design at Kyambogo University and a certificate in computer applications. Nyongoma would have loved to go further with academics, but she is limited because of lack of specialised schools in Uganda for students like her.
Daring to dream big
Nyangoma’s mother says the young lady was always keen about fashion and design from childhood.
“She could select and blend colours appropriately. We used to wonder how she would match and tell which colour blends with the other, considering her partial blindness,” she pointed out. With time, she became so passionate about celebrities.
Using her gift of retaining information, she started writing down scripts which could later translate into drama series.
But her dreams for making it big in the acting world seem farfetched because of the stereotype associated with children with special needs.
“I always believed that there was a smart girl trapped inside her. Whenever she set out to do something, she always did it beyond my expectations,” Mrs. Mawanda says.
This is what has kept her going amid the challenge of raising Nyangoma and her siblings almost single-handedly.
It has not been easy to shoulder the responsibility of raising her children after their father passed on seven years ago. She hopes her daughter will be able to navigate through the treacherous waters and find a man who will eventually marry her at the right time.
“As a mother, I have tried to talk to all my children about the dangers of sex. But above all, I have always prayed for all of them every day,” she says assuredly.
Nyangoma’s mother appeals for help from anyone who could know how her daughter can be helped to develop her career in drama without being stigmatised.
If anyone out there knows any school that can be of help, contact Nyangoma on 0775042476. She dreams of being an actor and script writer, she has niche in writing.