December 16

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This is what my Pulse Assignment is all about!

The Nacanieli Mataika Story

Nacanieli prouding holding 'Nacanieli's Letter'

This is Nacanieli Mataika, he has albinism. He is a brave, intelligent, funny, gentle man who is suffering from terminal skin cancer. He and others like him were the inspiration and motive behind the forming and establishing of the very first Fiji Albinism Project (FAP).

Nacanieli is seen here on his hospital bed proudly holding ‘Nacanieli’s Letter’. This letter was dedicated to him by the FAP. The original ‘Jasper’s Letter’ was written by the Mum of Jasper, a 4 year old boy from Australia who also has albinism. Jasper’s Mum decided to write a letter from his point of view to explain to his school friends on his first day of pre-school what it means to have albinism. The FAP thought this was a brilliant idea, renamed it after Nacanieli and adapted it to suit Fiji. As part of the FAP recommendations Nathaniel’s letter will be distributed to all school children with albinism in Fiji to encourage inclusion within the school setting and also to promote understanding and awareness of children with albinism.

This is Nacanieli’s Letter

Bula

My name is Nacanieli and I have Albinism. Sometimes they call me REA. I was born like this, don’t worry you can’t catch it. I have no pigment in my eyes, skin or hair I have trouble seeing in bright light and sunburn very easily. I try to wear my hat and glasses and a long sleeve shirt when I’m out in the sun and I also need lots of sunscreen. I like to stay in the shade.

You probably won’t notice that I have poor vision because I do most things just as well as all my frends. I even see very tiny things if they are really close to me.

Just remember, if my friends are standing with a window or sun behind them I’ll probably just see shadows. If I am looking for something, please don’t tell me “it’s over there” because I can’t see to the other side of the room. “Near the book corner” or “behind the table” would be more helpful.

Steps and slopes can be difficult for me to see and sometimes it helps if you show me where these are. Once I know my way around I am okay.

I love to make new friends, so let’s be friends and play

Vinaka

Nacanieli

Albinism is a genetic condition where people are born without the usual pigment (color) in their bodies. Their bodies aren’t able to make a normal amount of melanin, the chemical that is responsible for eye, skin, and hair color. Most people with albinism have very pale skin, hair, and eyes and need to protect their skin and eyes from the sun to prevent skin cancers, eye discomfort and possible blindness.

About Nacanieli

Nacanieli was born in 1969 on the small island of Nairai. Nairai Island is in the Lomaiviti group, and is part of the few islands within the Eastern division. This is a region which has a history of sea farers and of being the ‘Big Fish’ capital of Fiji. He is the son of a Fijian Chief and has 5 siblings, 2 older sisters and 3 older brothers, one of which also has albinism. He is known to all his family and friends as Tu Na (pronounced Toona)

Nacanieli is a very smart man, however due to a lack of social and educational  knowledge and awareness of albinism as Nathanial was growing up he was never told to protect himself from the sun. He attended school although cannot read or write, he struggled with his activities, especially with learning. He found it almost impossible to read the blackboard and couldn’t read his text books because albinism causes low vision problems. Despite this he was a much loved character throughout school and had a reputation for being mischievous, full of fun, and able to make everyone laugh. He smiles and tells me during his infant years his Mum asked him to carry all 6 family lunch boxes to school, on his way he couldn’t resist eating all the contents and wisely refilled them with fruits from the road side. He managed to get away with this for a week until he was exposed and severely chastised!

During rugby games Nacanieli struggled to see the ball, he was give special rules of his own, when he got the ball he was allowed to score for either side at either end, the only boy to ever score for both teams at both ends of the pitch during one game!

From being a young boy he loved to travel and was adventurous especially on the sea, he says it’s in his blood! He was part of the first 3 man crew that transported people from the islands to the mainland on the very first island vessel. These journey’s could be dangerous and would take days, Nacanieli fondly recalls using a Primus cooking stove, one evening during a really rough passage he remembers cooking a pot of cassava for their supper and trying to hang on to it for dear life fearing no one would eat for the rest of journey had he dropped it.

He loved to attend his local church service, was a member of the church choir and has a beautiful voice; he learnt to recite 365 hymns and remembers bible verses off by heart. He is a favourite when it comes to the local custom of delivering the welcoming prayers and addressing the audience.

He has a passion for gardening and spent many hours singing and laughing in the plantation tending to his much sort after fruit and vegetables.

Four years ago at 42 years old he left his beloved island to live with his sister in Suva and for the following 2 years worked for the council. To this day he is sadly missed by all his village community.

The Fiji Albinism Project has dedicated this tribute to him. It is for people like him that the Fiji Albinism Project exists today. His legacy will live on through every child growing up with albinism in Fiji in the future, he is one of the reasons every child with albinism will have the support they need to be able to read and write and have access to healthcare and knowledge, particularly around skin and eye care which they require to help them lead healthy successful lives.

Nacanieli (Tu Na) Mataika you are special and you have made a difference to the lives of people with albinism in Fiji!