A voice for albinism

By Mathias Huckert 28 July 2016, 12:00AM

Albinism is a congenital disorder, which is characterized by the complete or partial absence of the pigment melanin in the skin, hair and eyes of the affected person. 

This is caused by the non-functioning production of this pigment in the body. 

As a result, people with albinism are born with lighter skin tone and eye colour. 

Especially in areas like Africa, people concerned have to face serious forms of discrimination which actually go so far as that people with albinism have to be afraid of being murdered because of popular superstition. This is rooted in the belief that their hair and skin is said to bring good luck. Besides areas where such despicable thoughts are shared, albinism is still an issue of exclusion, also in Samoa where approximately 300 people with the disorder live.

But there are also people who care about those who are different. 

People like Reverend Siaosi Salesulu and Faaofo Junior Leota. The two men started the non-profit Clarence Sebastian Foundation four years ago in Vailele to give a voice to people with albinism. Since those four years, they have achieved a lot.

“Over the years, we have initiated lots of different programs for people with albinism,” said Faaofo.

Fa’aofo’s interest of supporting people with albinism in Samoa also derives from his personal history. His seven-year old son was born with the disorder. 

“Reverend Salesulu is one of my best friends and he was very well aware of what I was going through when my son was born. So he was the one who decided that we should form a foundation for people with the same experience, because there are so many parents out there who care for their sons and daughters but don’t know where to go.”

To give a helping hand to those people, Clarence Sebastian Foundation was born in 2012. 

“We offer a base and an information centre for these parents. They are welcome to visit us and learn what albinism is all about.”

According to Fa’aofo, the physical deficiencies albinism entails can be dangerous, especially in a country with so much sunshine like Samoa. 

“If people with albinism spend time in the sunlight, they get sunburn and heat rashes very easily.”

In one case, a member of the foundation even suffered from skin cancer, induced by the sunray’s high UV radiation in Samoa.

But the sensitive skin as well as defective eye sight are indeed not the only problems people with albinism have to face. Because of their different appearance, people with albinism often have to endure social discrimination, a sad circumstance of which especially young children are hit hard by.

“It’s just a fact that the first time children see someone with albinism, their attention is attracted on that person. But that is something people will get used to and it is just something they have to learn to deal with.”

To help people with albinism to deal with being different compared to their environment, Clarence Sebastian Foundation was able to collect several amounts of donations in the past. 

To achieve this, Fa’aofo simply connected his own professional background as the owner of JP Fitness in Vaimea with the charitable foundation. 

“In our first year, we did a charity boxing event called the ‘Fight for White’, which was such a great success that we even repeated it.”

Apart from other charity events, which are “already in the pipeline for next year” to encourage Samoa’s minority of people with albinism, the foundation has recently introduced another special program that was initiated by its chairman Reverend Siaosi Salesulu. 

“The reverend gave the after school program a push. He really has to be credited for all the effort he puts in the foundation, because with that programme, he helps out young students with their homework and studies after school in Vailele.” 

The support for students also includes the usage of computers which the foundation was able to provide with the donations of past events such as the mentioned fundraisers.

No matter what can be achieved for people with albinism in terms of supporting them, they will always stand out from the masses, but as Clarence Sebastian Foundation’s vice chairman Faaofo Junior Leota was able to tell, this specialty and uniqueness must indeed not be limited to their appearance.

 “They are like you and me and just like everybody else, they have their own talents. One of our members is a singer with such a beautiful voice and another one is very talented with the guitar.”

By Mathias Huckert 28 July 2016, 12:00AM

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