International Albinism Awareness Day, is celebrated annually on June 13.It’s a day dedicated to raising awareness about albinism and advocating for the human rights of individuals with albinism worldwide. This year marked the 10th anniversary of the UN day and we relook at a story published in The Sunday Times five years ago
IN 2014, when Mere Katoni gave birth to her second child, she felt confused.
Something had gone wrong.
“Just after I delivered my baby, I saw that his skin was different in colour,” Katoni said, recalling the moment she gave birth.
“Nurses announced the baby was a boy and cheered me on with ‘congratulations’ but I felt something was not okay.”
Katoni’s husband, Kaminieli Tola, was beside her at the Waiyevo Hospital on Taveuni. That gave her some relief.
Tola took pictures of the newborn and went back home to Qamea Island, while mum and baby remained in hospital.
He showed his parents photos of their strange-looking second baby.
“They later called (from Qamea) and told me over the phone the baby was an albino and that he may have inherited the gene from my father-in-law’s side of the family,” Katoni said.
Katoni is originally from Ovalau but was brought up in her mum’s village in Waitabu, Taveuni by her late grandmother.
Her husband, Kamini, is originally from Vanuabalavu in Lau.
The discrimination worry
The news of having an albino child was hard to swallow especially when her eldest child was normal. It took time before she accepted reality.
“At first, I did not accept it. I did not want my baby to have the gene for albinism because I knew how albinos were discriminated, especially in school and in public…they were often considered abnormal. That was the way I was thinking,” she said.
Albinism is an inherited condition that reduces the amount of melanin (brown or dark pigment) formed in the skin, hair and/or eyes.
In the United States approximately one in 18,000 to 20,000 people has some type of albinism. In other parts of the world, the occurrence can be as high as one in 3,000.
In Fiji, one in 700 people live with albinism, one of the highest rates in the world.
It is common for people to believe albinism is contagious, therefore those living with this ailment are often ostracised by society.
For Katoni this was a burden she knew she had to shoulder.
Rising above pain
Katoni said insulting comments about how scary her sons looked made her feel bad and guilty but she had to learn how to cope.
“I ignored them and viewed my child as created being that I have been gifted to possess.”
Today, Katoni’s first albino son is named Asaeli Tamanitoakula. His friends and family nickname him “Deli Boy” or “Asa”.
When he was 3, Katoni got pregnant with her third child. She didn’t know what to expect.
“I gave birth at the Colonial War Memorial Hospital in January 2017 and was surprised to have another albino baby.
“This time, as soon as I delivered, the midwives pronounced he was an albino. I smiled with happiness and thanked God for another beautiful son. How amazing it was to have two albino sons in a row.”
Katoni named her second albino son Amos after a Biblical prophet whose name means “a burden carried by God”.
As if a pair was not enought, Katoni gave birth to another son in May 2018, barely one year after Amos.
“I was thinking the 2018 baby would be like my eldest one and have normal brown skin,” she said.
“What a story of a lifetime. I gave birth and again he was an albino. I just went WOW! I was actually laughing with joy in the delivery room. I told the midwives, ‘this is my third albino baby’. ”
Katoni and Tola now have five sons, three of them have the skin condition. They are her white angels sent by God to nourish and protect.
“Now I wonder at how beautiful they are and I tell myself how amazing God’s creation is.
“The good thing is that I am working and can actually support them with what they need to protect them from their enemy which is the sunlight, I have to buy them sunglasses, long sleeve shirts, sunscreen lotion…the list goes on.”
A message of love
Her message to the public is to understand the condition and not discriminate albinos as they are the “same as us and very unique”.
As a message to albinos she said they needed to be positive.
“My message to albinos is to be courageous and keep going. Be yourself as you are beautiful and unique in the eyes of God,” Katoni said.
“God made you for a purpose and that is why you are here on earth today. Try to become someone important…be a purpose in this world.”
“I have a spiritual family upbringing. This helped a lot in dealing with my unusual births and accepting the God’s creation. I love all my sons dearly.”
According to one study, in some indigenous populations in South America, the frequency of albinism is as high as 1 in 70, while selected populations in sub-Saharan Africa have recorded between 1 in 1000 and 1 in 1500.
As for Katoni, though the days ahead appear challenging, she will love her ‘three angels’ as long as they live.
“I wish all my sons have a good career in life so they can at least provide for themselves and most of all work in a place where there is no exposure to the sun.”
“No matter what, I will be there, and will fully support them for life in this world.”
The brothers get ready for school..
Picture: SUPPLIED
Out and about.
Picture: SUPPLIED
Katoni and Tola’s boys in church attire. Picture: SUPPLIED
Katoni’s message to the public is to ‘understand the condition and not discriminate against albinos.’ Picture: SUPPLIED
Katoni and Tola’s frequent message to their children is “God made you for a purpose and that is why you are here on earth today. Try to become someone important…be a purpose in this world.” Picture: SUPPLIED
