FOUR SONS AND THREE ANGELS
Australian dermatologist Dr Margot Whitfield theorises about one of the possible reasons for the high incidence of albinism in Fiji. If you live in an island community for example of 3000 people, and even if your family chooses not to marry anyone in the immediate family, it’s possible that — five or six generations ago — you may in fact be marrying someone from the same original gene pool as yourself,” she says.
MOTHERS look forward to cuddling their bundle of joy the moment they are delivered. It's a feeling only they understand.
But in 2014, when Mere Katoni gave birth to her second she felt confused. Something had gone wrong.
That's actually the type of reaction from a mum when the physical appearance of her baby is not what she expects.
"Just after I delivered by baby, I saw that his skin was different in colour," Katoni said, recalling the moments after she gave birth.
"I thought something was wrong with him. The nurses did not also say anything was wrong.
They just announced the baby was a boy and cheered me on with "congratulations"!"
Luckily, Katoni's husband, Kaminieli Tola, was beside her at the Waiyevo Hospital on Taveuni. That gave her some relief. Her eldest son Apimeleki Vakacoko Jr has normal skin colour.
He took pictures of the newborn and went back home to Qamea Island after two days, while mother and baby remained on Taveuni.
He showed his parents photos of their second baby. His father knew what he saw.
"They later called (from Qamea) and told me over the phone that baby was an albino and that he may have inherited the gene from my father-in-law's side of the family," Katoni said.
She is originally from Ovalau but was brought up in her koro ni vasu (mum's village) Waitabu, Taveuni by her late grandmother.
Her husband, Kamini, is originally from Vanuabalavu in Lau.
Katoni's young family live in a small settlement known as Vunitavola, on Qamea island. This is where Kaminieli's grandparents lived and were given a piece of land to settle.
The news of having an albino in the family was hard to swallow especially when her eldest child had normal skin. 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. For those affected there are many challenges faced on a daily basis, especially where there is a limited education surrounding this skin condition.
It is common for people to believe albinism is contagious and therefore those living with this ailment are often ostracised by society.
For Katoni this is a burden she has had to shoulder for many years.
"This is a great challenge for me as a mother, to face how they are being treated by members of the public," she said.
Katoni said insulting comments about how scary her sons sometimes look make her feel bad but she has learnt to cope.
"Their (people who make negative comments) jokes is like they mean my sons are scary things to them as if they are not human...YOU ONLY RUN AWAY FROM A BITING DOG AND NOT FROM A HUMAN BEING - GOD'S UNIQUE CREATION."
"In a good and positive way, I deal with these comments by ignoring them and just being courageous with God's creation which I have been gifted to possess."
Today, Katoni's first albino son is a healthy five-year old 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 baby. 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", in the Hebrew language.
Australian dermatologist Dr Margot Whitfield theorises about one of the possible reasons for the high incidence of albinism in Fiji.
"If you live in an island community for example of 3000 people, and even if your family chooses not to marry anyone in the immediate family, it's possible that — five or six generations ago — you may in fact be marrying someone from the same original gene pool as yourself," she says.
Dr Whitfeld has worked in Fiji on and off for more than a decade and got involved in organising albinism awareness in the country after noticing a lot of young men with the condition developing skin cancers.
Asenaca Nainima of Rewasa, Ra lost her 45-year-old albino son Mateo to skin cancer last year and described him as a normal person who had a lovely personality.
"On the day I gave birth to Mateo, I thanked God for giving me a son. I didn't worry so much about having a child who was an albino. I loved and took good care of him because it was my duty as a mother," Nainima said.
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 about her eager anticipation.
"What a story of a lifetime. I gave birth to my last one 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 now has four beautiful sons, three of them having 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."
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 them is to be courageous and keep going. Be yourself as you are beautiful and unique in the eyes of God. God made you for a purpose and that is why you are here on earth today. Therefore, try to become something important…be a purpose in this world," Katoni said.
"I have a spiritual family upbringing. This helped a lot in dealing with my unusual births and accepting the God's creation. I loved my three sons dearly."
About a month ago, Katoni applied for financial assistance from the Department of Social Welfare and is hoping for a positive result so that she can take care of her three angels.
According to the United Nations' independent expert on albinism, Ikponwosa Ero, albinism affects people worldwide regardless of ethnicity or gender.
Generally, in order for a person to have albinism, both parents must carry the gene. In that case, there is a 25% chance that a child will be born with albinism at each pregnancy, says Ms Ero.
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 my sons have a good career in life so they can at least provide for themselves and most of all to work in a place where there is no exposure to the sun. No matter what, I will be there, and will fully support them throughout their lifetime in this world," she said.